What You Should Know about Living with a Chronic Illness | Invisible Illness

and so that's really hard still coming to terms with that I swear that that is the biggest thing that I have control over that will predict symptoms and I think that's helped me I'm already feeling myself losing a grip on who I was and becoming someone different and feeling like gosh what I thought I could have been I might not ever be able to be that so maybe a month or two ago I was getting ready for bed and I was telling Andy how I want to make another video about having MS and living with a chronic illness but I feel like I only have negative energy to offer and I don't want to do that so I kept putting it off and eventually I realized wait a second maybe sometimes there needs to be space made for negative energy and just for feeling the challenges and for facing them and for processing them and honestly sometimes I get frustrated when I see creators online who have a chronic illness but they either don't really ever talk about it or it just appears that their life is great and they never struggle with it and then I just feel like am I alone am I the only one who's struggling here which I know is absolutely not true but sometimes it can feel that way if people are only showing the happy pretty parts of their lives I also realized that maybe I also have some positive energy to bring so after further thought I'm finally sitting down I had originally wanted to make a video for a year after my diagnosis but I kept putting it off it's actually been almost a year and a half so here I am making it now I also want to add that this is in no way intended to be medical advice always talk to your doctor and also in this video I'm going to first be talking about things I've been struggling with and then the things that have helped me so if you don't want to see the things I've been struggling with if you're just like I don't want to hear that today I will put the time stamp right here for the things that have helped me so first I'll tackle the things that have been a challenge for me and the first thing that's been challenging for me is just the symptoms you know I'm living with multiple sclerosis which is an autoimmune disease that attacks the central nervous system so it can present in many different ways I often vacillate on which symptoms I think are the worst because they also shift a lot over time sometimes it's the vision problems which can be really scary when things are blurry or when I have what looks like a black screen across all of my vision or all the light in the room flashing around you waking up to that is really scary sometimes I'm frustrated by the tingling and the sizzling in my legs it's kind of the sensation of bacon in a fry pan and it can keep me up at night and it also serves as a reminder that I have lesions in my spine which might increase the likelihood that I have problems moving my legs down the road other times what bothers me the most is the dizziness the fact that I constantly feel dizzy not one moment do I not feel dizzy but sometimes it can get way worse than others and in those times I feel totally disoriented and have a really hard time functioning sometimes I get most frustrated by the cognitive changes and feeling like I'm losing who I am when I just can't seem to remember names or when I struggle to put a sentence together eventually I get there but feeling that slowness and feeling like I can't articulate things the way I used to be able to is very frustrating but I have to say lately the thing that's been hardest for me is honestly the fatigue and I feel like when I tell other people about my fatigue symptoms no one latches onto that like it doesn't feel special or serious because it's like everybody feels tired sometimes but to be honest it is so incapacitating to feel this level of fatigue where my eyes sometimes burn they're so tired and where my whole body feels heavy and doing anything or even thinking feels so hard and I think that's a symptom that a lot of different chronic illnesses have and that a lot of people face but just isn't necessarily very validated by Society like you don't hear people talk about fatigue that often as being like a really serious thing but it is because it affects my ability to do just the everyday ordinary things like cooking dinner going on a walk so I just want to mention this if you're somebody who's dealing with any of these symptoms or other symptoms with your illness you know sometimes they're not very validated but I just want you to know that I get it and that it's hard and that you're not alone a second challenge that I faced with my illness is feeling isolated now I want to add the caveat that I do have a lot of people in my life that are supportive and extremely kind to me and I don't know what I do without them I'm so grateful but I also feel like there's this element of isolation in that nobody else can fully understand my symptoms or my experience and especially for those people in my life whom I don't talk about my illness very much too they like really don't get it and it's hard to be around people when I'm experiencing dizziness and fatigue and all these weird visual things and to just have to sit there and just be happy and engaged and I push through and I'm able to do it quite often and make jokes and be in the moment but it's hard and it feels like I'm in physical crisis every day but I can't talk about it all the time because that would be excessive but as a result it's like I'm hiding something I'm hiding a part of myself from the people around me and therefore it's like we're not actually authentically connecting sometimes and I mean of course when I'm hanging out with somebody ultimately I'm still connecting with them but it's just this feeling of I'm secretly dealing with all this stuff and I'm not talking about it or at least I'm not talking about it as much as I'm experiencing it or thinking about it and so ultimately I feel like less understood and less connected to people around me and it's also hard because sometimes people either just don't ever ask about it or they do ask but they ask at awkward times like when I'm saying bye and getting in my car or they finally do ask but I don't know what to say because it's like there's so much going on what little tidbit do I give them and then if I do talk about it more does it sound like I'm complaining an event eventually will I push them away because I talk about it too much so I think it's this constant struggle of communicating and struggling with how to connect with people so if I'm honest I feel like I've just been less social in general that also I think is related to the fatigue and the symptoms but I also think there's an element of just feeling like I don't know how to handle this and to live with this chronic illness in the context of social situations I'm still navigating it I'm trying to find a balance and I'm also trying to be better about being a little bit more real like if somebody does ask just to be like you know it's been hard rather than just being like Oh I'm good because I've also tried that route and ultimately I don't know that's hard too but if anyone who's watching this who is dealing with a chronic illness has found a good balance with that definitely let me know how you handle that because I would find that really helpful a third challenge I've faced is adjusting to Invisible illness and disability it's hard for me I feel like because I have an invisible illness where when you see me you don't see the challenges I'm facing and so sometimes I feel like I sort of invalidate myself or other people invalidate me because I seem fine I don't blame them I even invalidate myself because I'm like I sound fine for the most part I seem fine although I will say people who are really close to me like my husband Andy will often say no I can I can sense a shift I see you struggle to find words sometimes or I see you struggling or I I can see it and your eyes how tired you are but overall it's invisible to people around me and just how much it actually impacts my functioning so I just wanted to give space for that that having invisible struggles can be really hard also visible ones are hard too not trying to invalidate that this is just my personal experience that because my illness is invisible and you don't really see it it can feel very hard to accept that it is a real functional problem for me and then I feel guilty about even feeling bad about it like even part of me feels guilty making this video I feel weird sort of in a way complaining about my symptoms but the reality is they're real and they're a challenge and they affect my functioning they slow me down so I'm allowed to be frustrated by what I'm dealing with another thing I've struggled with is unsolicited advice and honestly it's frustrating when sometimes people tell me what I should do or how I should handle things when I'm working very hard to figure that out for myself I literally have a team of doctors I've received a second a third a fourth opinion that being said I mean sometimes advice is helpful I don't mean to say it's bad all around and I know people have the best intentions when they're giving advice but honestly sometimes it's tiring to hear basic basically how I'm handling my illness wrong or how I could be handling it better when really I'm working on all cylinders to try to address my symptoms and trying a bunch of different strategies in order to improve my life another thing that has been a challenge for me is people who tell me they have a friend who have the same condition I do who's fine and I will say there have been times where hearing that makes me feel less alone so it's not like it's bad across the board but it is the most common reaction I get from people when I eventually tell them about my diagnosis they say oh I know somebody with that and they're living X Y or Z life and they're able to do this or that and I get that often people are just trying to relate to me and trying to express like I get where you're coming from and I want to give you some hope and I really appreciate that at times but also it is frustrating too because it's like well first of all Ms looks very different for different people so you shouldn't assume that whatever it is that this other a person you know experiences is what I will experience secondly I could also see a lot of people looking at me and using me as an example of oh she seems fine she's still working she's doing great when really again with the invisible illness thing I'm often struggling or maybe that person's friend is very private about their symptoms and yes they're able to do a lot of physical stuff but maybe at times they're really struggling so I get where people are coming from with this but sometimes it can be tiring when it seems like everybody has an example of someone they know with this illness Also if anyone I know is watching this and gave an example to me of someone they know with Ms don't worry it's not like any individual person really frustrated me my overall point is you just don't know what's happening behind closed doors and you don't know what people are struggling with and that's something I've learned through having this illness I'm learning to judge people less or to make assumptions about other people's lives less another thing I've struggled with is feeling like I'm a bad friend or family member because of the amount of effort I put into things ever since the Flair that led to my diagnosis my symptoms became way worse and I just haven't had as much energy as I used to so there are times where I feel guilty either because I feel like I'm a burden to people or I'm just not doing as many things with people that I care about or I don't know I'm just not there for people in the way I truly would like to be and so that's been hard to feel like I'm not there for those I love the way I'd like to be and a lot of guilt and shame comes in around that so I'm still struggling with that but I'm also sharing this maybe to normalize that and maybe to try to acknowledge for myself that you know that's a part of the process maybe that will shift over time and maybe it's okay to adjust my expectations for myself and also to try to see if there are ways for me to connect with those people and to support those people I love in different ways if I can't do it the way I used to do it and I'm also really learning to communicate again around my symptoms with the people that I love okay editing Alan here I realized I totally missed a huge difficult part of having a chronic illness which is navigating the medical system I have dealt with so many challenges lots of er visits trips to the hospital medical bills also my insurance company refused to pay for a treatment that my doctor ordered so that involved an appeal and a ton of paperwork then when that didn't work I had to go to foundations to try to find funding so it's been a huge challenge every step of the way and I don't just say all this just to complain I'm really saying this so that if you are dealing with something like that too you don't feel quite so alone like it is a challenge that people with chronic illnesses face and I just want a little space to acknowledge that the final thing I'll mention at least today that I've been struggling with is just this feeling of getting left behind of feeling like Ugh my symptoms affect my functioning so much I'm already feeling myself losing a grip on who I was and becoming someone different and feeling like gosh what I thought I could have been I might not ever be able to be that and my life might look very different from what I imagined and so that's really hard and I'm still coming to terms with that but I am trying to come to a place of acceptance of that and realizing that you know I don't know what my future will look like and maybe it'll look different even from what I'm imagining now but that is life and we all deal with challenges and I'm not alone in that I hope that wasn't too negative for you as I'm talking about these things I honestly feel like a little bit of a weight lifted off so I do appreciate if you watch that part it's nice to be able to process some of this stuff and just say it out loud and I hope that if someone watches this and has been dealing with similar things some of that will resonate with them and just make them feel like okay I'm not the only one so now I want to transition to things that have helped me to end on a slightly more positive note the first thing that has helped me is to self-validate to acknowledge that what I'm dealing with is hard and it's okay to be upset about it sometimes sometimes I just need to have a cry sometimes I just need to talk about it with Andy or somebody else close to me I've even struggled with giving myself permission to use the word disability or to acknowledge how my symptoms affect my functioning in such a major way I just feel like I'm mourning a loss a loss of ability to do things and that's okay it's normal to have to process a loss and ultimately those feelings give me more awareness in that it gives me more self-awareness kind of connectedness with what I'm experiencing and an ability to maybe have a little bit more empathy for some of the people around me who are dealing with things that are just as or harder than what I'm dealing with I think I feel those things even more strongly now and I think there's something good about that to be able to take space for other people and to feel for them I think there's a power in that because I know when people have felt empathy for me that is the most healing thing for me emotionally in this whole process so I think there's a strength in feeling that pain and being able to feel that for others another thing that's helped me is to try to be a little bit more intentional about when I am or am not bringing up my symptoms or my Ms I don't want to overly use it as an excuse for things but I also think if I don't feel like I can do something because I'm just not having a good Ms day I want to give myself permission to be able to say no I'm also working on if it's in the right context of course and there's the space for it when a friend asks how I'm doing that I respond a little bit more honestly that I am struggling instead of just saying I'm good and not that I have to do that all the time there might be moments where we're having fun and I don't need to talk about my Ms but I also think there have been times where I've kind of hidden it because I don't want to bum people out and I've realized if I end up expressing it too much maybe I'll be annoying but maybe it's worth the risk in order to be authentic with people who are close to me another thing that's really helped me with my chronic illness is good sleep I swear that that is the biggest thing that I have control over that will predict symptoms now it's not that if I get good sleep I'm guaranteed to have a good day sometimes I get great sleep and then I still have horrible symptoms the next day but if I get bad sleep it is almost a guarantee that I'm gonna have a bad Ms day so that's one thing I've really worked to be on top of and I think that's helped me a final thing I'll mention today that's helped me a lot is having good supportive people around me I have to say there have been some people in my life who have just been so there and willing to sit and listen and empathize with me in a way that's so healing I'm incredibly grateful for that and one thing is for example in the case of Andy he really understands my symptoms in a deep nuanced way that I didn't even think was possible and he takes the time to really try to understand more and that ultimately does make me feel way less isolated and ultimately makes the whole thing less difficult for me I have to say I'm so grateful for that and just people who are understanding even in more subtle ways I just think there are little ways that people sort of acknowledge it or validate it just in a simple Ah that's tough it means a lot and it just makes me feel like okay what I'm going through is hard I am allowed to be upset about it I'm also allowed to be grateful for the amazing people in my life and how much they're there for me even if they're there for me and just cheering me up or having a good time I don't need to be thinking and talking about my Ms all the time and so sometimes even just being able to connect in a happy way too is good but overall I feel like I've been really lucky for some of the people in my life anyway I would love to hear any reactions any of you have about symptoms or living with a chronic illness what you do to help yourself also I'd love to hear what you're currently struggling with or have struggled with in the past because again that makes me feel less alone and I like to learn from all of you and hear your stories I just happen to have this little YouTube channel where I can talk about it but I also want to hear from you because to me all of our stories living with something like this they're all important and also if you watched and you don't have a chronic illness thanks for watching and taking the time to learn a little bit more about one person's experience and also maybe you're dealing with something too that makes you feel isolated or that you struggle with and hopefully maybe you feel less alone too because I know believe me we all have our challenges in life thank you so much for spending this little bit of time with me and I hope you have a wonderful rest of your day bye [Music] thank you

Channel: Elin Lesser

Views: 21,748

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Id: BoWMYNHVQD8

Length: 20min 23sec (1223 seconds)

Published: Fri Mar 03 2023