How to Cope with a Serious Illness Diagnosis

[Music] we just hit 1 million subscribers on youtube and to say thank you we're releasing this series in its entirety on youtube so that you your family and friends and those that you love can continue to get in-depth credentialed mental health education thanks for your support and remember whatever you're going through you got this dr romney thanks for being back on mad circle when we talk about a life-altering medical illness we're not talking about the flu what are we talking about and you know and and you know with all due respect the flu can sometimes make people so severely ill that you know really contribute to mortality or other long-term illnesses but when we're talking about life-altering illnesses we're typically talking about chronic illnesses um or illnesses that will have a significant impact on quality of life and physical health and these can range from cancer to muscular dystrophy to dementia to um to a whole host of autoimmune conditions like lupus but these are illnesses that once you have this diagnosis you are going this is going to put into motion the need for the person who's been diagnosed with the illness to get very involved with medical treatment and often there's very intensive there can be intensive acute medical treatment that follows and then months or even years of follow-up treatment so not only does the person's life course of their life can often change for months or years in the face of that diagnosis so too can the lives of the people around them so it really is it's life-altering and these medical illnesses don't necessarily mean someone's going to die though many people who get these diagnoses find themselves immediately thinking about their own mortality because in many cases having one of these illnesses can shorten lifespan for example we know many people who have been diagnosed with cancer successfully go through a course of treatment are in remission and are living very very full lives but at the time of the acute crisis it is life-altering and for the rest of a person's life they will say this is something i have to monitor a recurrence or i'll always think back to that time so when we talk about these physical conditions why do we then need to talk about mental health mental health and these physical conditions are inextricably linked for many reasons number one when a person gets this a diagnosis of a significant physical chronic physical illness there's often a period of grief and adjustment a person may recognize my life is about to change they may need to leave work they may need to go on disability they're definitely going to change the way they spend their time some people may immediately need to get a surgical treatment or some kind of intensive medical treatment like chemotherapy or radiation or some other surgical treatments it might be a financial stressor everything may not be covered so people might be experiencing significant stress reactions and anxiety but we also have to remember people who may already have mental health issues who may have a history of depression a history of anxiety or any number of other long-standing mental health issues for example even a personality disorder the stress of a major medical diagnosis can exacerbate their existing mental health symptoms or can be enough of a stressor that it might even foster the onset of significant psychiatric symptoms so either it's long-standing mental health conditions or it can really get those symptoms going a person for example having paralytic anxiety they can't sleep they can't stop thinking about this diagnosis and being fearful of it then we have to look at the next step of this which is mental health symptoms can interfere with how someone engages in their own medical treatment so for example there's a very robust literature showing that having mental health symptoms depression anxiety a history of past or ongoing particularly ongoing substance use but anything that impacts mental health can negatively affect adherence adherence to pills you're being take given to take it home physical therapy showing up at doctor's appointments anything that requires follow-through on the on the patient's behalf as they go on and also having mental health issues can negatively impact social support networks it's quite possible we know this that people living with mental illness often have smaller and less robust social support networks which again is going to give that person less support at exactly the time they need it as they're trying to rever to traverse the really complicated space of managing a medical illness so this is almost like it's the impact of mental health and mental illness is coming at this from all sides before a person's diagnosed coping with the initial you know the initial shock of being diagnosed with an illness adjusting to the acute treatment to the long-term treatment and then we also know that mental health issues mental illness can negatively impact lifestyle choices we know that people living with we know that people living with mental illness often don't have as good sleep schedules they often have poor nutrition poorer stress coping with stress all of those things can exacerbate the kinds of lifestyle behavior changes we need to see in someone that i should say all of these things can limit how well a person engages in the lifestyle changes they need to engage in in the long-term follow-up after being diagnosed with a life-threatening illness so as you can see this is every step of the way and so in the best possible model we would have what we call integrated primary care where a person's mental health and medical health is constantly coming together that there's a team not just of medical professionals and specialists but also mental health professionals who are well-versed in the course of this particular illness so they can work with both the patients and the patient's family yes and speaking of the patient's family i think that is an area that is not discussed enough the mental health impacts of having a mother or the matriarch or patriarch of the family uh getting this diagnosis what impacts have you seen in your private practice from the family members who are having to struggle through that the impact on family members is so so challenging because you got to remember every every member of a family is often affected if it's a parent they're children whether they're adult children or still minor children a spouse extended family who might be living far away and feel very helpless because they can't be there with them but supporters go beyond just the family very close friends um extended family co-workers and colleagues who often see you more often than your friends and family do because they're with you all day so the network of people who are impacted when somebody receives a a sort of a life-altering medical diagnosis it can result in significant anxiety and negative mood symptoms and people who are loved ones or friends or colleagues of the person who is ill it can result in rumination guilt because they feel like why did it happen to them i wish it had happened to me instead especially when it's a child or even an adult child who gets diagnosed and not the parent there is a sense of helplessness and hopelessness that you can't take away the fear that you can't take away the discomfort and you can't take away the diagnosis so there's a lot of reactions and they differentially affect people not everyone in the same family is going to be affected the same way some people are in a state of denial some people will be in a state of agitation but by and large the prevailing theme i hear from people is how helpless they feel about not knowing what to do or how to be there for someone when they're going through an illness and down the line kyle because that's in the acute phase but months or years down the road sometimes the people around them will start reporting burnout and caregiver burden because it's quite possible that other people in the family system are now having to hold more of the burden of things that need to be done around the house and other duties as well as having to take care of the person who's ill and then the sense of guilt that well i shouldn't feel bad they're sick but the people doing the caregiving are burning out too which is its own phenomenon so this is again very complicated and a lot of it has to do about where we're catching someone and sort of the the span of this particular long-term medical illness mental health impacts all of us and those with a life-changing diagnosis like cancer are no exception med circle is teaming up with f cancer for this giving tuesday to raise funds for those in need if you're interested in being part of this digital fundraiser use the links below this video we'd love to see you there and raise a ton of money for f cancer because you know what f cancer remember whatever you're going through you got this this is a topic very close to me when i was 13 my mother was diagnosed with cancer and she battled it for three years and then she died and it was a uh certainly the most impactful thing that happened to me as a child and it changed our entire family yeah oh my gosh all of a sudden my best friend is gone and i'm here with my dad and my brother going who are you guys again right because i was always just with my brother so i'm really interested to hear in later sessions how parents can correctly communicate this to their children uh without lying to them yes but still getting the message across in a nice way yes um what i'm what i want to know right now though is how can taking care of one's mental health improve possibly the outcome of their prognosis so one and here's where it becomes an interesting conversation that in my ideal universe people would be taking care of their mental health with the same vigor they take care of their physical health that there would be annual mental health physicals that you would get checkups that you would get assessed for anxiety depression maladaptive health behaviors all of that so we can kind of do a calibration every year that's not unfortunately how the world works so long-term lifelong mental health care stress management adhering to healthy behaviors maintaining healthy social networks having meaningful and purposeful activities that's always going to keep a lot of gas in your psychological tank so that when you are hit with a life-altering crisis like a medical crisis you may be more likely to be more resilient in the face of it but again like i said that's not always how the world works so when a person is face down with such a diagnosis and is feeling like i don't know what to do it's not just one approach in order to really shore up your mental health in the face of this this means several things there i cannot think of a better time for people to be in therapy and ideally with a therapist who's trained to work with individuals who are managing medical health issues there's a whole discipline of health psychology that actually we've talked about on med circle and in this discipline are people who are trained actually that was my training i was trained in clinical health psychology originally to work with individuals who are also managing what we call comorbid or co-occurring is a better term co-occurring medical and physical health issues to help you know to sort of they're trained to understand the pitfalls but also the grief and the stress and all the things that go along with it but being in therapy is critical because many times people when they get a diagnosis like this they're terrified for themselves they don't want to make their families worry they don't want to share their fears with their family members but they want a place to talk about them and guess what a person is not defined by their physical illness they still have other stuff going on in their lives you know what they may have had marital problems going into this diagnosis they may not want to talk to their spouse they may need that other space so i think that's one place is that therapy becomes important number two is to work with your health care provider if this is something that works with you on finding support groups some people find tremendous solace in knowing there's someone else going through this other people don't feel like they want to talk to strangers that's a personal decision many people do find it useful and those can either be in person or virtual people sometimes find online groups even on social media platforms of people who've come together shared in sort of sharing their experience with whatever the health issue is number three is to maintain as much purposeful meaningful and enjoyable activity in your life as possible that could mean for some people continuing to work even if it's on a part-time basis for some people that means not working because their job isn't gratifying or it's too stressful whatever level of exercise you're permitted to engage in given your medical condition other activities that give you pleasure being with friends doing a hobby but maintaining that piece of your life because it connects you to the things and the activities and the people perhaps that give you joy and then practicing other health behaviors sleeping as much as you can under these conditions good nutrition activity like all of the things that keep us healthy and no matter whether we're ill or not it's very important at this point at this point in someone's life that all of that needs to be happening and it really should be something that happens right away [Music] dr romy i think a lot of people think that there is a correct way to respond to getting that initial diagnosis is there a correct way there's absolutely not a correct way i mean people have reactions ranging from grief to anger to denial to sadness and in some cases even relief explain the relief part that a person may have been having all kinds of symptoms and couldn't make sense of them right and their quality of life was diminishing and they couldn't figure it out and a diagnosis at least gives them a plan yes it may still be unsettling but like okay now at least i know there's a treatment we're going to follow because until then they might have felt like i don't even understand what's happening the fact is relief is probably not going to be a common reaction to getting a severe medical diagnosis by and large the reactions tend to be fear terror denial hopelessness helplessness confusion they tend to be anger they tend to be negative emotional states that's the norm and for the person experiencing them you know there's no there's no wrong reaction and there are certain historic factors that can make the reaction even more complicated for example a person with a history of trauma may receive a receive this kind of traumatic news even harder so people with histories of long-standing histories of mental illness mental health issues it may be harder to receive this news as well so there are certain underlying factors that can also impact how somebody receives news of an illness but again there is no right answer any way a person responds is the right answer in the age of social media there seems to be a popular way of going about fighting a big disease like cancer by posting it on instagram and being very transparent with your treatment which can oftentimes pressure other people struggling with cancer to do the same thing but they don't have to do that no i mean i do i think that we we live in an interesting time right in the macro kyle i actually think it's so important that everyone know that however they want to talk about whatever they're going through illness or otherwise be open and received in a non-judgmental space so i completely i'm actually very happy when our people say i have an illness and i want the world to know about it i make helps me feel better in the same breath though some people that's just not their natural way they're terrified they don't want to share it with the world and they often feel diagnosis shamed or share shame like they feel like they have to share and they're not suppo i mean they feel like they have to share and they they don't want to or they're too scared to or they they don't feel like a hero they just want this all to go away you know i have one friend in particular i remember watching her go through her journey with breast cancer and she really really was burning out under people saying come on i'm your cancer cheerleader and you can do this and she said i i don't i don't want to be a cancer cheerleader i want to get better i'm terrified i don't want to talk about this with people i don't know and the only thing i can do as her friend is give her permission and say you don't have to talk to anybody if you don't want this is your body your story your journey your experience and so i do think in sort of the sharing world we live in maybe merits for some it's not for everyone and that for people who are going through this and want this to be a very private experience they may not want to share it with anyone but their physician right and that's their prerogative when somebody's sitting in that physician's office and they get that information or they get that phone call they obviously can have a range of emotions from a mental health standpoint what would you suggest they do in that moment you know in that moment one thing i would suggest and this is something it's actually interesting this came of a lecture i listened i was at last week and this woman worked in the area of crisis she focused on people who are in periods of crisis and she said one of the most important things you can ask people at a time of crisis especially to someone who's like a physician or first responder what question am i not asking right now right she's a genius i have to look up her name so maybe we can put her name up on med circle because it's really it was such a wise thing because what am i not asking so if people would have the wherewithal to do that once upon a time kyle back when i was in training oh god early i guess no was it was the late 90s it was mid to late 90s and i was training at ucla in a breast cancer treatment program as part of my health psychology training and one of the things that they did there and this was to tell you was the 90s it was a long time ago this was a place where women were coming to get a second opinion about how to proceed with breast cancer treatment it was a very uniquely designed clinic but the piece i want to talk about here is they gave every woman a tape recorder and a stack of cassette tapes because it was before digital recorders they made the women record every specialist they talked to that day and i think that in a case when someone's getting this diagnosis ideally they're with someone else that they might even ask their physician can i record this conversation because you're about to tell me things i might forget ask them is there something i haven't asked you yet but actually get in there and hopefully there's someone else in the room with you i also think though that this might be a multi-step conversation when you first get the diagnosis you might be so overwhelmed that you [Music] need a second third or even fourth conversation about this some people might find it useful to be done in writing i know where i get my health care there's a portal through which we can email healthcare providers it may be i need to see this in writing some people might find that useful some people may get information on the phone and say i need to come in in person you've got to figure out the way in you want to get the information do you need to record it you need to get it in writing do you need to write questions out ahead of time would you do better if you were with someone else i would say more often than not people would do better if someone else was there because it's a second pair of ears hearing and asking questions but give it give it a beat yes you know for it to settle in and that you're not probably not going to get all of the information you want in one fell swoop and keep composing questions that you need to answer yeah i spoke to somebody who had gone through cancer before this shoot and she said when she got the diagnosis she felt like she was in a state of emergency and obviously that makes sense but she said i didn't even know what the doctor was telling me yeah i didn't know what the disease was i didn't know how it was going to look i didn't know what the treatment plans were i knew nothing but i was in the state of emergency so she said her advice to other women in her case it was breast cancer she said her advice to other women is that yes it's urgent but right now in that moment it may not be an emergency and her advice was the first step was to just learn what you can because most of us go in to a doctor because we are not the doctor and we don't know anything about that thing yeah and i think that though you said when the woman you were talking to said she was in a state of emergency what does happen to us when we get this kind of information our sympathetic nervous system is on and that is the worst place to be processing information right right you know we are so we almost go into a state of mini paralysis right we're not taking in information well so that's why i'm saying you almost need to wait a beat and go back in as some of it sinks in because once that fight flight or freeze reaction happens we're immediately like what do i need to do where do i need to go what do i need to prepare or i i can't hear anything you're saying to me that we really need to give people a minute to process you're not going to get it all in that first phone call yeah we know everyone responds differently but for the supporters listening to this what could some of the feelings that their loved one is feeling when they get this diagnosis so when your loved one is getting this diagnosis the person who's actually experiencing the illness they're going to experience everything from grief to rage to sadness to confusion to despair to [Music] like denial into like i said to relief you know there could be any number of reactions your family member might even be a matter of fact they may turn to you say that was the doctor turns out i do have als turns out i do have muscular dystrophy and you're sobbing and this person almost looks the person who actually has the illness may look numb a person can have any number of reactions there is no right reaction huge and what's really important is as the supporter and loved one you may feel like you want to talk about it you want to process it they're the ones leading the dance at this point yeah if they say i need to go take a little bit of time by myself then you say that is fine i am right here on the other side of this door but you don't say no no no how dare you pull away from me we're in this together don't make this about you this is about them now that denial word stuck out to me because for me i'm imagining my loved one who's in denial and i'm saying look this is serious we have to take this seriously and you're acting like it's the common cold how do i have that conversation or do i it depends on how long the denial lasts for if you're in the initial minutes and hours after somebody being informed of a diagnosis denial would be it's almost like again it's that first stage of grief what starts getting tricky is if now the clock is ticking a day or two three or four has passed by the health care provider has indicated very clearly you need to come in tomorrow and they're not following through on the appointment that's where you're going to probably have to muscle up double down and get the health care provider involved that you may not be able to do this alone you're not going to get here through brute force by screaming at them and by yelling at them you may do well by giving them a forum to talk about this and instead of saying becoming hysterical and saying we gotta get it and deal with this to say what are you feeling right now do you feel comfortable sharing that and say i hear you this is terrifying and they'll say i'm not terrified i just can't be bothered right now and then so you say okay whatever it is your health care provider is saying come in for another appointment can we just go in for the other appointment but you may have to literally bring in the health care provider to also lead the conversations and there are some people in denial who will wait and wait and wait and it can get to be really really concerning and frightening because the fact is unless they're incapacitated there's really not much you can do in terms of forcing them into care so instead of trying to beat them over the head with it you really want you really want to say i hear you you're not too worried right now that's great however they're strongly suggesting we take the appointment today can we just go and hear what they have to say for those people out there who go into grief when they get this diagnosis what are your tips and advice for them you're going to go into grief when you get it's not even like for those who all will all will you know so everyone will go into some period of grief it's because grief is adjustment right grief is adjustment adjustment wow yes you know it's not grief is not a process to be pathologized it's actually the human psyche doing what it does when there's loss and when a person gets a diagnosis that is a loss it's a loss potentially of quality of life of certain physical functionality certainly it could even be the loss of time you may have a foreshortened future all of that said we know the classical stages of grief of denial anger bargaining depression and acceptance they don't always go linearly a person can go from denial to bargaining to acceptance back to depression i mean they can cycle through but it is you will go through stages and some people initially will have that numb denial and then rebecca can't believe this is happening this is so unjust this is so unfair you know they'll start seeing different doctors sometimes people go in second third fourth tenth opinion that can be part of the bargaining as well getting second opinions is important but there's a point at which sometimes a person is now there actually might be prolonging some situations but they're going to go through those stages being supported during those stages though is really really important for a person to be able to talk to someone who's trained in this to walk them through those stages of grief and for the person to not feel like there's something wrong with them yeah because they're going through grief we so reserve the word grief for law secondary to death death right that's just one form of grief and don't you feel like we rush people through grief absolutely oh it's gonna be okay we're in this together it's like let them have a moment goodness the more you try to rush grief the longer you're protracting the process grief is personal and it is not going to go according to anyone's schedule the more we give grief space to sort of run its way through the more likely we are to have a better outcome for the person who's experiencing it because sometimes when people are going through grief they feel guilty i'm taking too long oh i gotta stop this i gotta stop all this crying right no you don't you don't you don't you don't you sit here i've had clients come in who are grieving over a diagnosis i say you are welcome to sit here for an hour i got nothing but kleenex in that cabinet okay we will sit here and you will cry and in between those tears you want to talk you talk yeah and we can do this for weeks and then at some point given the permission i've had many clients say they cry for a while and then say okay i'm good like emotion works its way through us we really these emotional systems in this are actually pretty well designed it's that just that we fight them right but they become a problem yes and that reminds me we did a series on somatic experiencing and if that resonated with you i highly suggest you watch that as well we're going to keep this conversation going on the initial diagnosis how to talk to your children and your other family members [Music] as a patient what is the best way to tell your family member that you've received this diagnosis that is going to be very specific based on the family structure roles in the family ages of children all of that i think that a person in some ways sort of needs to know what who and what their family is about like you need to be self-possessed of that and many people can get help with having that conversation through their health care provider more and more and more health care providers especially those providing you know acute guidance to people in specific areas for example people who are going to be living with cancer or specific diseases like you know als or muscular dystrophy or any or chronic obstructive pulmonary disease any of these illnesses that have a lot of health ramifications they'll often have a team of social workers or psychologists whose focus is to help people know how to best communicate with family members oftentimes a person who is in a long-term committed relationship or a marriage will tell that person first because that is the person who will often be sort of the point of contact and will be working with other family members informing children for example is going to have a lot to do with the age of the children obviously adolescent children in many cases will be able to receive the information as an adult would but they may need very different kinds of supports probably more intensive support you know this better than i would you lost a mom when you were a teenager and many times when i think about your story kyle it really i mean it it strikes me how painful that is i have a 16 year old daughter and the idea of her coping with my loss is something i simply can't get my head around so what you had to go through you know to think about what supports would have been useful for you at that time probably would have been different for you at 16 than they would even been at 26. absolutely you know you're still in school there's still a reliance you have on a parent and so i think that developmentally they can hear it you really need to be there and to support them open conversations about it ensuring that they have whatever therapeutic support that they need with younger children it definitely would behoove a person to work with their own pediatrician that might know their child explain to them what's happening and see what guidance they can get from them a pediatrician is likely to have referrals or resources in terms of maybe even knowing a developmental pediatrician child psychiatrist child social worker somebody who is well versed in talking about illness with children this conversation is going to be guided in part by prognosis is the parents physical ability going to change is their appearance going to change for example a parent potentially losing hair due to chemotherapy there's many things a child who's younger are going to need to be prepared for so the conversations in many ways are going to be steered by that and having professionals who are well-versed at different developmental stages at how to have these conversations or even the help caregivers you bring into the home you may need help with your children and the kind of consistency that might be needed at that point it may help to have a family member come in and be that extra pair of hands or a long relied upon nanny may end up spending more hours with the child but you want to give them as much consistency as possible this is definitely not a time to really be keeping secrets it's really about meeting family members where they're at and how they can manage hearing the information i think that what is very useful is that if a person gets a diagnosis like this of a long of a long-term severe life-changing chronic medical illness that they do have someone in their life who is their point person who helps them organize the information in the best of scenarios you've got someone who's kind of got the answers yeah they're getting chemo no they're getting not getting surgery they're going to be here they're going to be there so like there can be some answers so the person who's experiencing the illness is not being barraged with questions and answers so it's like this is where we're at we'll keep you posted and again different families have different boundaries different styles of communicating so there's really no one right answer but i do think having that one person in the system it may or may not be a spouse or partner it could be a parent it could be a sibling but that person who's a go-to that's really interesting when we're talking to the young kids especially are there things that no matter what the prognosis is no matter what the situation is that we shouldn't do i think completely keeping it a so-called secret you know that letting the child know something's going on but trying to protect them from things like fear so keeping it entirely business as usual that might really depend on the developmental phase you're not going to tell an infant that's infants on you'll be able to uptake the information but once i think that lying to them would be like deliberately lying you know that um that something isn't happening that is or is happening that isn't or something like that that might leave a child even at a young age feeling betrayed again because it's going to be so different based on prognosis and different aspects of the illness like i said changes in appearance or functionality and the age of the child is going to matter is where i'm really going to defer to somebody whose expertise is like going i would say take it to the expert if this was even happening in my family right if i had a five-year-old child i would say i need to talk to someone about how to talk about this to my child i had once a child who was very ill my younger daughter once felt very ill when she was two years old and was sort of touch and go there and although it was only for a short period of time when i was in the middle of that short period of time i didn't know where the end was and her sister was five and so for me one of the questions i had had is what do i tell her five-year-old sister who's wondering why her mom has moved into the hospital and her sister's in the hospital and one thing that i found useful in talking to the medical social workers at this hospital was don't be alarmist you know let her know her sister is sick and if we can get clearance for her to come and play with her so she actually her older sister came into there's like a play room in the hospital on the pediatric floor she'd come and play with her so i was also having to ensure that my five-year-old had a routine and so i had to bring my mom came in made sure my five-year-old was on a routine i was in the hospital trying to keep my two-year-old on a routine we did not scare her sister but we i also didn't keep her older sister away from her which i think would have been very unsettling so but that was with the help of people who worked in the hospital who kind of helped me figure this all out yeah i'm reflecting on how my parents communicated that information to me when my mom was diagnosed with cancer and they were they told me up front she has cancer and i said okay you know and then they said we're going to treat it through chemo and here's what you can expect and i was fine with all that the what i wish they would have done and of course hindsight and they did the best they could i'm not placing judgment or blame on them today but what i wish would have happened is about a year into it i was led to believe whether it was inadvertently or not that the worst was behind us and recovery is now about to happen i see yes and it wasn't until the following year where i go now hold on i thought you said recovery we were on recovery path but she's doing more chemo and she looks worse than she did and she's sleeping 22 hours a day and i remember calling my mom and saying you still have cancer don't you and she said yeah i do and i go i thought you didn't she said well no no i still have it and i remember being i felt cheated i felt out of the loop and as someone who at the time really thrived with control and information was control for me i i really didn't appreciate that yeah yeah and i think that as an adult man you can look back on that and see it through a slight lens of betrayal i think if it happened to you as a child you might have felt the same way too we underestimate the unbelievable capacity for empathy that children have and children appreciate what time is yeah and that you can really find a way like set up structures so there is some play time even if mom or dad whomever is sick is fragile that there can be routine and i think that routine becomes very important that maybe there is story time with that parent or they do a craft or something but that's something predictable for both the child and for the parent and that's their time together and for that child who may have to learn to become more gentle with a parent that's in pain from their illness becomes an incredible place of empathy but the predictability of it can be very very important for a child no matter what a child wants routine and it may not be the old routine but i think that for example secreting away the parent from the child i can't imagine well and for me it was i feel like i missed out on memories i could have had yes because i was a kid in high school so on saturday night i went to the movies i wish i would have not because i don't remember the movies i saw or the people i saw the movies with but i remember leaving my mom and i left because i thought i have my whole life yeah i did i thought we were a normal situation and we weren't in a normal situation and so that that's still today i go i wish i would have behaved differently yeah and i think that that's where i think any family going through this working with if you're if somebody in your family is ill the family will have the hospital will have social workers for you to talk with to really process this you can read you can get education you can you know watch series like this but it's important to know where your kids at kids can actually sometimes handle a little more information than we think but i also think that things like routine structure predictability especially for the younger children when there is a parent who's going through an illness becomes very important it becomes an entirely different conversation obviously when it's the child who's sick because obviously that takes a toll on other children in the family and the parents and all that this time we're sort of talking about a top down that it's the parent or some other close film it could be a grandparent too especially if the grandparents close to the child so we mentioned in a previous session on the role of guilt that a patient can place on themselves by thinking they are becoming too much of a burden on those around them how do they manage those feelings having a sense of guilt when a person is experiencing a severe chronic medical illness is quite common for a variety of reasons being a burden being expensive everyone's worrying about me something like it's it's probably how they were before they hadn't known right under much and so and especially if they see their family is suffering that they see that actually the medical bills are piling up that you know some somebody's really having a lot of caregiver burden having to take care of them it's absolutely critical this is again i know i come back to this as an old standby but mental health therapy exists for a reason this is where therapy becomes critical as a place to process the guilt and that might be individual therapy it may even be couples therapy as a safe place for both of them to talk about perhaps one spouse saying or one partner saying this is this is a lot and maybe they can they can start coming up with suggestions like respite care or other kinds of solutions that will allow for a little bit of a balance respite care is when a a helper or some kind of caregiving is given and this might matter for example if someone has central lines that need to be placed or is catheterized or needs some kind of nursing care that maybe a person who's not even a nurse can do but bringing in someone in from time to time so maybe the other partner can i don't know run errands go skiing for a day take a hike go to work whatever it is that might give them joy or pleasure or just what they need to do and so i think that therapy becomes critical as guilt is a feeling at this point but it's sort of something that it becomes a negative emotion that creates more stress and burden and that having a conversation about it becomes important guilt is also something that can be really well processed in a support group feature where you see that other people are going through what you're going through too other people with cancer are having this reaction too talking about it sometimes just knowing someone else feels guilty can dial down that feeling for you and when you bring up therapy you bring it up because it is so effective yes it is especially i feel when it is done as soon as possible absolutely before there is overwhelming feelings of guilt before there is a little bit of anger in the marriage or resentment in the marriage if you can go and work with a therapist as a couple individually and create a game plan then you're setting yourself up for success absolutely [Music] i want to start by reading this quote from adams and lin-man from 1974 and it says the patient's capacity to adapt to illness over a long period of time has a direct effect on the successful outcome of the illness by discarding false hope destructive hopelessness and restructuring the environment in which one now functions what are your thoughts on that i love that line because what it does is it gets at the the the issue of addressing thoughts and environment and i would say by extension things like routine and all of that that those issues and when you think about the environment those are things like adherence making adherence easy keeping the pills where you can see them maybe moving the bedroom to the first floor like um having healthy options to eat there like it's that idea of restructuring an environment all of us could be doing that but somebody who's going through an illness doing that can be a game changer but also like they said go but they talk about false hope and then they talk about sort of the despair of hopelessness both of those are errors in thinking that can really do a lot of harm to somebody who is experiencing a severe medical illness false hope obviously can be dangerous for a lot of reasons number one a person may have such unrealistic expectations that they're not able to cope when more and more bad news is coming down about prognosis or quality of life limitations and all of that they also it may also delimit them from doing the kind of planning that needs to happen true end-of-life planning while they still have um while they still have clarity of thought estate planning you know planning for you know especially if there are you know if not even minor children you know young adult children to be able to do that if there's false hope they may not be engaging that planning and using their time well at that time of their life but then and i think we probably see this even more is the despair and the hopelessness that it's you know all is lost and that that in fact there you know that everything is gone that the change in quality of life you know really is a state of despair rather than something that can be adjusted to and what that that statement gets at beautifully is the need for building in realistic expectations flexibility and preparation and all of that happens from having a good structure around the patient socially practically through their medical team nobody can do this alone yeah and so it's really that idea that the the person the people around them at home at work at you know in their health care setting are all working together having a severe medical illness doesn't mean that somebody stops working for some people continuing to work in some capacity is actually what does give them a little bit of hope they still get to use their mind or they get to do the thing they love they may not do as much of it they may go on to a restricted schedule but not it's not like there's a one-size-fits-all strategy what those authors are referring to is the fact that there needs to be a strategy right now here's a big question how does one combat hopelessness while keeping their outlook realistic so real being realistic and having realistic hope is quite possible because the question then becomes hope for what and that has to be calibrated over time so if a person indeed is now being told that the course of their illness is not proceeding well and that they are going to start experiencing more and more quality of life issues that they might have difficulties with walking or self-care and all of that that they the realistic hope is that then okay there are limitations on being able to do this this and this it's a constant recalibration but i think the key isn't just about hope it's about hope that's embedded in reality and what what really does you see i'm saying like that's a blind hope that oh no some miracle cure is going to come along i remember once working with somebody um and this was social it wasn't even you know clinically and in this particular case he just come to me sort of feeling he's feeling hopeless his mom was quite ill with very advanced terminal cancer and the family had been told repeatedly this is not you know this is this is the end of her life and she insisted on continuing to consult to tremendous costs we're talking six figures hundreds of thousands of dollars spent on people who definitely seem to be selling her false cures and false hope these false cures were not doing any harm to her it was a really you know like it was almost sugar water if you will but what it was doing was she was not directly addressing end of life she had maybe 30 days and she was planning stuff out six and seven months it was incredibly painful for the family to witness and i remember about 27 days after him and i had that conversation she passed and i think that you know in some ways they felt they felt like a double loss like there was this like almost like there's this innocence of her like she was a child at that point they felt frustrated and that it was her money and so she was spending it as she wanted and that she was sort of being taken advantage of but she was totally sound mind she really believed so for him he thought it might have co-opted how she would have spent the last 27 days of her life had she known differently interestingly she stayed completely mentally clear to the end other than having this false hope so hope is a complicated conversation but i do think it's about infusing it with reality right somebody really sitting with a person saying okay here's what is going to happen your physical infirmity means that the odds of you being able to still walk on your own in about a month or two are going to be limited so maybe the person then is working with their family getting their home ready for that yes you know that sort of thing um maybe taking a last trip to a place where it will still be doable whatever whatever the things are the person wants it's but it has to be realistic is is could we just call that acceptance it is acceptance i mean realistic hope is acceptance i agree with that that's well put in the sense that you know you see a a future that's going to be different than the one you had you'll think about how you can function in that future as fully and meaningfully and purposefully as you can and so there is that sense of acceptance that now this illness is in my life i've worked with many people who have pushed through long-term chronic illnesses one thing that they repeatedly talk about is that even though they're better kind of back online in terms of they're not going in for regular medical treatments anything more is fatigue they're wiped out like they were never before they'll say you know just the the act of kind of getting through my morning routine and into midday and i'm feeling tired and they're saying i feel like i'm too young to be taking an afternoon nap but that's what i need that to me and then they let themselves have the nap that's realistic hope and understand that okay maybe i can do a couple of hours what i used to work 10 hours a day i can do two or three hours a day when i used to do a long commute i can't do that anymore and that's the acceptance the realistic hope the idea that life does look different now now i'm going to bring up the topic of resilience what role does that play and how does somebody maintain healthy resilience through this time so resilience is an interesting term right because we still wonder is resilient something that we fully cultivate how much of it is something that someone's born with i often view resilience as a bucket a bucket or a box or a bag that holds lots of other things it holds you know social capital the people you can access around you your belief in the things you can get done and your thoughts about the world the future your capacity so it's partly thinking it's partly structural it's partly social support a lot of it is about beliefs and all of that together make up this thing called resilience there's also a big piece of flexibility in this so people who are more resilient tend to be more flexible they can change more quickly and kind of go with the change there's a real dynamic quality to them and you can imagine if you have a chronic medical illness to be able to be dynamic and say yeah we're gonna have to change to this treatment now we're gonna have to move you to this hospital turns out that you're gonna have to be on dialysis a while longer that those kinds of pieces of news can be devastating for someone and the more resilience you have the more you can say okay this is going to be hard but i know i can do this that statement i know i can do this is resilience so it's definitely a buffer against the stress and the negative emotional reactions that having a long-term illness that impact of that on a person so when people say i can't do this i can't yeah that duchess what do they do to move to the can do this so when a person really saying i cannot do this that what you want to do is let them talk about talk out their cannedness first okay okay i hear you so you really feel like you can't talk to me about that and then this is something i talk a lot about with my own clients and people when i'm talking about you know doing therapy i call it emotional resistance training you've told me all your can'ts now play a game with me here tell me your cans oh that's good okay i like that you said game too yeah just tell me and i do this with clients all the time they say even as i'm saying this to you doc i don't believe what i'm saying i don't care if you believe it right just tell me from what you can do yeah can you stand up show me yeah you know can you whatever and and now sometimes they'll even they'll be a glint in their eye and like okay you know and they'll be frustrated with me but i call it resistance training because i'm saying that you you've pulled it this way now i want you to pull it this way okay you got this and we're going to pull it back yeah and the idea of that game is that i'm trying to help them lay down new tracks yes new muscle memory yes and that like we'll do it through journaling we'll practice it in session there'll be lots of ways they have to like if you say every time you give yourself a can't you have to promise me you're going to give yourself a can even if the can doesn't ring true right and so it's just sort of a back and forth and slowly but surely we do try to change the self-talk we try to come up with alternative thoughts and that's a big part of coping with chronic illness is changing the conversation about what they can't do to the things that they can do and part of what's so hard is they used to be able to can do many many more things the list of cans may have shortened so it's just easier to say i can't right you spoke about exhaustion for someone who's possibly going to chemotherapy and radiation and they don't feel like they can go sit in a therapist's office in addition to that what is your response to them fair okay exhaustion is very very real and so again we go back to the realistic hope and the realistic expectations what can you fit in a day it may be too much to get up go to chemo and go to therapy in one day some people might work be working with a therapist that's willing to do it via teletherapy that they can talk to their therapist from bed i've done that with many clients with chronic illnesses they find tremendous comfort in therapy but they just can't they don't even have the energy either getting an uber or certainly not drive themselves it's like okay you know we have our set time and they call me at one o'clock and we do their session right there through you know i have sort of this online platform i'm able to use with them so that they have a confidential session and we're talking and there at least they're lying down it's more comfortable and then they can take some rest afterwards having shorter sessions we assume an hour 45 minutes 15 minutes i don't even know where that number came from right in a lot of primary care settings there's more talk of doing 30 minute or even 15 to 20 minute little boosters another thing that can happen is that the therapy can be integrated at the time you go for chemotherapy that if that clinic can provide those things in an integrated manner but if you're making one trip and you can get it all done together but it's really making a list of what is your must do today maybe that's just one thing you knock off all day get that done and then go home and take the rest you need but have like one benchmark for the day for some people when they get a medical diagnosis like this part of their defiance and their denial is i'm going to keep up my old schedule because in that way you're not sick that's right that's how i'm i'm going to go back to my old schedule and that means everything's fine and but the fact is push putting yourself through that much exhaustion can actually harm your healing so it's not like you're proving anything to anyone and your body may be wearing out so it is about also making an adjustment to a new kind of schedule [Music] let's start off with the topic of reactions when a loved one comes to you and delivers this news that they've been diagnosed with this life-altering medical illness how should that person react you know there's i i loathe to say the word should because in the moment of getting that news we'd all like to think we're graceful and i'm so sorry how can i be there for you some of us might cry you know moan yell say things like how can this be you know you know some people may be very appropriate to say i'm so sorry we don't know how we're going to react like we'd like to think we will but i don't know that there's a should i think a gold standard to sort of strive for is to not bring more distress into the life of the person who's already experiencing the illness to be as empathic as possible and to find out how you can be helpful to them even if that just means doing nothing and that's where people get frustrated is if the thing they're being asked to do is nothing yeah i remember when my mother died and i would tell people my mother died i granted this is a little different but they would always respond with their story of losing a grandfather or somebody in their life and i couldn't then switch my brain to be there for them exactly and i i really just wanted it to be about me for this moment and uh they couldn't do that right and so i'm very cognizant now when people share something with me i don't immediately go to my how i can relate to that i try to be making most of them yes yes and ask them how are you feeling or you know how are you doing um just be there for them give them the opportunity and they're like i'm fine i'm fine and then you say it how you know is there anything i can do to help and say no let them know i'm here you know for anything if you want to talk if you want to distract i'm here just let me know and but here's the thing don't put the entire onus on them that doesn't mean you have to keep calling them like every day but i would definitely reach out you know it might be and you know your friend is it their text friend they're you know instant message friend they're a phone call friend you know and figure out those ways and you might even know enough about their rhythms in their life sometimes when person is adjusting to the shock of having been diagnosed with an illness that's going to result in significant life change they may not even know what to ask for but if you know this person you may very well know if they have to pick up their kids from school at 2 30 and that might be a little bit of a challenging thing say you know what i got the school drop off i've got the school pick up this week or maybe the drop-off so they might might they might need rest or if they have to go into the hospital anticipate the issues trash cans that may need to be pulled in kids that need to be picked up laundry that nate may need to be folded and you know you can even build in and say hey listen i'm going to come by we're both loving watching binge watching this show how about we just i will fold up that laundry together meaning that hopefully you're doing most of it and you're watching with them figure out the little places you can help sometimes people want to come in as big ticket heroes right like i want to be the one who's going to drive you to surgery and sit by your bed they may actually need help on the home front that's right you know quietly figure out what those things are and help some of those and even just say you know listen i've got this part taken care of and sometimes people would be like oh my goodness that just made me feel so good because it is a good question to ask what can i do or is there anything i can do but a better thing to say hey i got this thing on friday and anticipate it to a point like you might say well i'm going to buy them 500 worth of groceries and fill their freezer they may not want you to fill their freezer and you may fill their freezer with stuff they don't want right you know so say listen what you know i i know that mary has soccer every thursday until six and that's pushing into dinner time how about i bring over then they might say great versus you know bringing a catering truck to there that's right you don't want this to be heavy-handed yes for people who are far away across the country i mean distance wise how can they support that person this is a tough one because especially when this is someone you're close to it could be a family member very very dear friend you know there's different approaches people have to this now in some cases if it is someone very very close to you a parent an adult child a grandchild you may feel like i've got to be there check in with them and say listen i'm going to head there i you may need my support but be mindful in that decision if you do end up going over there they may not have room in their house you may need to either stay with another friend or family who lives in the area or take a hotel like be aware that you're not creating a burden by just showing up but if you want to be in the hospital be helpful again be aware of how you can be helpful but if it's long term if it's weeks or months and you have a job or you have other responsibilities where you live and that person lives far away you may be more limited in helping them in sort of the day-to-day instrumental i'll pick the kids up from school i'll drive you to a doctor's appointment sort of thing and so what ends up happening is figuring out from your relationship with them what they may need at a minimum reach out and always let them know you don't need to pick up the phone i'm calling you to let you know i'm here these days everyone on their phone is able to see who's calling it's not like the old days right you don't need to pick up right if i am of use to you pick up yeah i'm thinking of you let them know that because the last thing again playing into that guild theme is like oh my gosh they keep calling i don't answer they may be they may be struggling with their own anxiety and depression helplessness hopelessness exhaustion being overwhelmed and the responsibilities of their lives and maybe their medical treatments they may not have it to talk to you and one thing that really angers me is when i do see dynamics where a person thinks they're being helpful to someone who's sick and they keep calling them and reaching in and they actually get angry like i keep calling him and they don't answer the phone and i'm like okay they're going through a lot your phone call is not their priority so this isn't about you right it's about them that's right and so i think that it's really you know for some people it's reaching out like i said could be texts it could be phone calls i tell people maybe lay off on too many of the internet articles you're reading about this condition and always sending them links please lay it off it really can be a bit much i know a few people close to me have managed you know chronic illness issues in their families and they're saying if one more person sends me and often a poorly researched article on something i i they're like do they not think i don't have google right i can't look this yeah and so there's a frustration because once again it's this burden that they feel like i have to respond to this i really don't care about this and so whatever you do in trying to help someone from a distance don't add to their burden to help you feel better oh huge so that's that's really really important and figure out that dance with them you may also have contact with other stakeholders near them for example let's say it's your sister who lives on the other side of the country you yourself have a job and family here and your sister is you know is being treated for cancer and she's married and you get along fine with her husband her husband or her wife maybe your point of contact then you talk to the partner and you say hey listen you know how can i be helpful and they may be able to tell you more realistically what is or isn't needed so there may be sort of different ways also to communicate with the family it may not always be directly with the person who is the patient but with other people in the system who might say you know what she's not asking you but it would be really great if you could come out here yeah and then listen to that well and in today's world too there is there are so many ways to bring services to that person you can get food delivered you can get you can send a masseuse over you can get their house cleaned i mean all from your phone and those are actionable helpful things assuming you're not intruding on their environment that shows that you're not only thinking about them but you're still getting stuff done for them yeah um this these conversations that a patient and a supporter have will be emotionally charged i'm assuming a lot of the time sometimes sometimes at least and a lot of supporters want to tell them it's going to be okay tell them that they're going to get through this tell them that oh don't worry about that when in actuality it might not be okay they might not get through it the way they see and things aren't getting better they're getting worse so how can a supporter navigate these conversations don't don't don't blow smoke don't give false hope you know don't don't try to feel like you have to give the sun the sun shiny message you know it's not all you know rainbows and moonbeams this is hard and that it's okay to not say everything's going to be okay you know everything is going to be i mean in the grand scheme of things i suppose everything's going to be okay but at that point that person it's not true they're not feeling it they may not want to hear it so don't feel like you have to come in like the cheerful police and make everything okay like meet the individual where they're how are you doing they might say today's a really rough day and then just sit with them it might be you holding their hand maybe you're sitting next to them and say you know i am so sorry and i'm here and and leave it at that you know our our temptation is it's going to be okay you know why because we need it to be okay right don't project you into the situation this isn't your okay it's theirs it's so good what have we not talked about that we need to talk about when it comes to this topic i think that this topic is something that's going to become more and more relevant to more and more people as americans get older you know the baby boomers are getting older in a big big you know group and you know getting sick is part of getting older so i think more and more people are going to be dealing with this with their own parents adult children friends extended family co-workers all of that and i think that it really does become a moment for all of us honestly to build up that empathy muscle that this is really about how do you meet someone where they're at and put yourself as well as you can in their point of view but also reflect on how your behaviors actions and words are impacting them you know in our zeal to help someone we need to make sure it's about them not about us and also we need to remember that there are people out there where this is their job to let people know the best ways to help people who are going through chronic medical illness more and more medical clinics hospitals hmos have really really skilled social workers therapists counselors psychologists and psychiatrists available talk to those people if this is your family they're often trained on support resources books educational resources support groups therapists use those resources we often get so caught up in the physicians dealing with the medical we feel that the equally important other half to this is supporting the psychosocial piece of it right also don't minimize the practical a lot of this is structural just making sure that the living environment of the person makes sense that it suits where they're at things are easy to find routines are kept like whatever routine we have those things give us comfort help the person keep those the ways you can help someone are there many more different ways you can help a person rather than just wiping up tears and trying to be a cheerleader finally the supporters need support themselves when you're going through this and you're supporting a loved one through an illness it can be devastating for you the idea of potentially losing a parent or a loved one or anyone close to your adult child spouse this is devastating and so many people get so deep into the thickets of caregiving they forget to take care of themselves and it is very important when you're a supporter to make sure that you're also getting the services you need so a you can be fully present for that other person but b so you can be fully present for yourself yes absolutely my my i think my favorite moment from this series was the realistic acceptance or the realistic hope which is the acceptance of that situation because there are things out of our control but it doesn't mean you can't uh move through that the best way for yourself yes and once that gave me peace of mind just just understanding that better so thank you as always dr romney for your insight and your advice and education thank you for watching this i'm kyle kittleson remember whatever you're going through you got this [Music]

Channel: MedCircle

Views: 360,710

Keywords: mental health, dr ramani, medcircle, mental, health, illness, chronic illness, medicine, tedxtalks, depression, pain, end of life, psychology, suicide, psychologist, anxiety, breast cancer awareness, breast cancer, what is cancer, how to prevent cancer, chemotherapy, tumor, treatment, oncology, nucleus medical media, health care, kyle kittleson, masterclass, video, interview, documentary, youtube

Id: XbvyUztNmmk

Length: 68min 2sec (4082 seconds)

Published: Fri Nov 12 2021