What does a life long chronic illness look like?
March 5, 2019 5:43 AM Subscribe
I have in the past year been diagnosed with a chronic illness and had to give up my job because I am too unwell to work. I'm trying to get an idea of what the rest of my life is going to look like.
This illness causes chronic pain and extreme fatigue. There is no cure, just management of symptoms. It's not progressive or life threatening, but it has definitely drastically altered my life.
I had to give up my job because I could no longer cope. I need a significant amount of bed rest, every day. My husband is having to do a lot more of the cleaning and cooking that I can no longer manage. Apart from work, I also cannot do many of the fun activities I used to enjoy, like hiking or going around museums. Basically my life has become very limited.
I am working with my doctors to try different medications that may help me manage some of my symptoms. I am also getting counselling to help me deal with this, especially the issue that I feel like a huge burden as I am totally financially dependent on my husband and he does so much to look after me.
I've tried to connect with other people with chronic illnesses online, and one thing that has struck me is that most of them are like me, in that they are recently diagnosed and in their 20s or early 30s. Even the few older people seem to be people who have recently become ill. In trying to accept my situation and recalibrate my expectations and plans, I'd really like to see some examples of people who have lived with a chronic illness for a long time.
How is ageing affected by being chronically ill? What sort of life can I expect or hope to be living when I've had 20+ years of this illness? Is my life essentially over or is their still hope, not necessarily of a cure, but of a life that is still fulfilling while being chronically ill?
Either your own personal experiences or links to books/articles/blogs would be most welcome.
(Anonymous so as not to alarm friends who maybe don't realise how much I'm struggling.)
This illness causes chronic pain and extreme fatigue. There is no cure, just management of symptoms. It's not progressive or life threatening, but it has definitely drastically altered my life.
I had to give up my job because I could no longer cope. I need a significant amount of bed rest, every day. My husband is having to do a lot more of the cleaning and cooking that I can no longer manage. Apart from work, I also cannot do many of the fun activities I used to enjoy, like hiking or going around museums. Basically my life has become very limited.
I am working with my doctors to try different medications that may help me manage some of my symptoms. I am also getting counselling to help me deal with this, especially the issue that I feel like a huge burden as I am totally financially dependent on my husband and he does so much to look after me.
I've tried to connect with other people with chronic illnesses online, and one thing that has struck me is that most of them are like me, in that they are recently diagnosed and in their 20s or early 30s. Even the few older people seem to be people who have recently become ill. In trying to accept my situation and recalibrate my expectations and plans, I'd really like to see some examples of people who have lived with a chronic illness for a long time.
How is ageing affected by being chronically ill? What sort of life can I expect or hope to be living when I've had 20+ years of this illness? Is my life essentially over or is their still hope, not necessarily of a cure, but of a life that is still fulfilling while being chronically ill?
Either your own personal experiences or links to books/articles/blogs would be most welcome.
(Anonymous so as not to alarm friends who maybe don't realise how much I'm struggling.)
let your friends know how much you're struggling. they can't support you if they don't need you know help. some friends will fade away because they don't know how to or don't want to deal with someone with chronic illness. or, maybe the friendship was built around hiking and you can't do that anymore so the friendship naturally fades away.
get your legal shit in order. wills, powers of attorney, all that stuff. do it now while you don't really need it. it may come to pass that you need it all of a sudden, and it's good to already have it done.
if you're in the us, have you applied for disability?
it depends on what your illness is, but mine will kill me early. it has been incredibly hard to come to terms with that, and it varies day by day how okay with that i am. i am mostly not okay with that. if you're struggling with that type of thing, it may be helpful to find a therapist (i need to take my own advice).
you can absolutely still have a life that is fulfilling, but you may have to adjust your expectations of just what exactly that means. really examine your new normal and figure out how to adjust your previous goals/dreams to fit that new normal.
posted by misanthropicsarah at 6:21 AM on March 5, 2019 [3 favorites]
get your legal shit in order. wills, powers of attorney, all that stuff. do it now while you don't really need it. it may come to pass that you need it all of a sudden, and it's good to already have it done.
if you're in the us, have you applied for disability?
it depends on what your illness is, but mine will kill me early. it has been incredibly hard to come to terms with that, and it varies day by day how okay with that i am. i am mostly not okay with that. if you're struggling with that type of thing, it may be helpful to find a therapist (i need to take my own advice).
you can absolutely still have a life that is fulfilling, but you may have to adjust your expectations of just what exactly that means. really examine your new normal and figure out how to adjust your previous goals/dreams to fit that new normal.
posted by misanthropicsarah at 6:21 AM on March 5, 2019 [3 favorites]
I have a lot of friends that have lived with serious chronic illness for 20+ years. Most are happy, fulfilled, in stable partnerships, and some are working (FT/PT). So, first I want to say that your life CAN be fulfilling despite this sudden right turn.
I am not inthe US, so the socialised supports/laws around abilities have been one of the main factors in everyone’s success. Another is a group of non-judgemental friends willing to treat everyone with respect and meet people where they are, and a third has been a supportive partner or family who is also then heavily supported by the wider community.
Good luck, I hope things become easier with time.
posted by saucysault at 7:19 AM on March 5, 2019 [2 favorites]
I am not inthe US, so the socialised supports/laws around abilities have been one of the main factors in everyone’s success. Another is a group of non-judgemental friends willing to treat everyone with respect and meet people where they are, and a third has been a supportive partner or family who is also then heavily supported by the wider community.
Good luck, I hope things become easier with time.
posted by saucysault at 7:19 AM on March 5, 2019 [2 favorites]
One frequently overlooked factor is the grieving process....yes, your life as you can see has altered dramatically and you need to grieve for the life that could have been because you've been heavily socialised into believing in a certain trajectory and the carpet has literally been pulled out from under you.
as others have said, after giving yourself time to grieve, map your support networks as you would network a business relationship and let people know your new reality and allow them to respond.
A few of the articles here will land with you and they range from the chatty to the scientific so you're covered no matter what your initial knowledge base is.
Obviously the support groups online tilt heavily towards the newly diagnosed but some of the MS blogs are from 2002-3. Blogs were the thing back then so probably the best way of seeing a chronology of a longer term journey. 17 years is a significant chunk of time and it would be rare to find a longer chronology.
here's a list of best books recommended by chronic sufferers about living with chronic illness.
I'm so sorry you're going through this change in circumstance, I have a chronic condition but am able to work full time due to the support available on the NHS and the EU legislation that means I have a lot of protection. I personally know about 5 people living with chronic conditions exacerbated by pain & fatigue and what I found is they tried hard to find their people, if you know what I mean, whether in person or online, and then they made sure that they first invested their energy in themselves so they were well enough to look out for their immediate nearest & dearest, applying Spoon Theory, and when they had a day with a few spoons left over they networked with their groups.
posted by Wilder at 8:14 AM on March 5, 2019 [6 favorites]
as others have said, after giving yourself time to grieve, map your support networks as you would network a business relationship and let people know your new reality and allow them to respond.
A few of the articles here will land with you and they range from the chatty to the scientific so you're covered no matter what your initial knowledge base is.
Obviously the support groups online tilt heavily towards the newly diagnosed but some of the MS blogs are from 2002-3. Blogs were the thing back then so probably the best way of seeing a chronology of a longer term journey. 17 years is a significant chunk of time and it would be rare to find a longer chronology.
here's a list of best books recommended by chronic sufferers about living with chronic illness.
I'm so sorry you're going through this change in circumstance, I have a chronic condition but am able to work full time due to the support available on the NHS and the EU legislation that means I have a lot of protection. I personally know about 5 people living with chronic conditions exacerbated by pain & fatigue and what I found is they tried hard to find their people, if you know what I mean, whether in person or online, and then they made sure that they first invested their energy in themselves so they were well enough to look out for their immediate nearest & dearest, applying Spoon Theory, and when they had a day with a few spoons left over they networked with their groups.
posted by Wilder at 8:14 AM on March 5, 2019 [6 favorites]
I am several years into my chronic illness journey, though not yet at the 20-year mark. Personal experiences follow:
Initially I thought that how I was feeling at diagnosis was the best I was ever going to feel (i.e. i thought it was all downhill from there). But in my case, my symptoms improved dramatically after some initial trial and error on the right meds, useful dietary changes, etc. over the first few years. Some changes (in terms of reduced activity levels, etc) that I had to make initially to regain some degree of equilibrium did not end up being permanent changes (others did).
Symptoms were initially confusing, inconsistent, frustrating, but as I have lived with this for longer, things have started to make a little more sense -- I recognize flares earlier now, for example, and I have a plan of what to do to help mitigate them to a significant degree. This was also achieved through trial and error over the first few years. This is not to say that everything is now perfect all the time -- I still have very bad times sometimes, but they are much less frequent than I originally expected them to be, and the good times are significantly better and more frequent than I expected.
I also have had to learn not to go overboard on good days... the initial temptation when one starts feeling better/having some good/better days is to do ALL THE THINGS (relatively speaking), which can put you right back on your butt (figuratively speaking). Learning to pace myself to optimize the good days without triggering more bad days has been a major part of my journey.
I've had to make a conscious effort to learn to be gentle with myself (e.g. I am not lazy when I need to rest), and also to recognize periods of anxiety and depression for what they are, and for the lies they often tell. I am still learning to set boundaries when needed, and ask for help when I need it / accept help when offered.
The first couple of years after diagnosis was a scary and frustrating time for me, but was also comforting in a weird way as someone who previously spent a lot of time feeling really awful but not knowing why. With a diagnosis I was able to start working a plan, and I ultimately found great psychological/emotional benefit in that.
Re: aging, I don't know what the future holds for me and my condition -- it is progressive and can be life threatening. Most patients have a reasonably good prognosis with appropriate treatment, but outcomes are much worse for a not-insignificant percentage. I try not to worry about that too much (even if I were healthy I could get hit by a bus tomorrow, ya know?)... I have a good doc, which is key, and she works *with* me, which is key, and I take great comfort from knowing that we are monitoring my status appropriately and will be on top of any negative changes/trends quickly. However, I also try not to take anything for granted these days - I find myself being more mindful and appreciative of what I am able to do during good days, knowing that those days are finite and precious.
And actually, that awareness is the #1 thing I'm grateful for in this whole journey... because ultimately everyone's days are finite, and my illness helped me really wake up to that and internalize it and appreciate the hell out of the good things in my life.
Good luck and very best wishes to you.
posted by somanyamys at 8:17 AM on March 5, 2019 [13 favorites]
Initially I thought that how I was feeling at diagnosis was the best I was ever going to feel (i.e. i thought it was all downhill from there). But in my case, my symptoms improved dramatically after some initial trial and error on the right meds, useful dietary changes, etc. over the first few years. Some changes (in terms of reduced activity levels, etc) that I had to make initially to regain some degree of equilibrium did not end up being permanent changes (others did).
Symptoms were initially confusing, inconsistent, frustrating, but as I have lived with this for longer, things have started to make a little more sense -- I recognize flares earlier now, for example, and I have a plan of what to do to help mitigate them to a significant degree. This was also achieved through trial and error over the first few years. This is not to say that everything is now perfect all the time -- I still have very bad times sometimes, but they are much less frequent than I originally expected them to be, and the good times are significantly better and more frequent than I expected.
I also have had to learn not to go overboard on good days... the initial temptation when one starts feeling better/having some good/better days is to do ALL THE THINGS (relatively speaking), which can put you right back on your butt (figuratively speaking). Learning to pace myself to optimize the good days without triggering more bad days has been a major part of my journey.
I've had to make a conscious effort to learn to be gentle with myself (e.g. I am not lazy when I need to rest), and also to recognize periods of anxiety and depression for what they are, and for the lies they often tell. I am still learning to set boundaries when needed, and ask for help when I need it / accept help when offered.
The first couple of years after diagnosis was a scary and frustrating time for me, but was also comforting in a weird way as someone who previously spent a lot of time feeling really awful but not knowing why. With a diagnosis I was able to start working a plan, and I ultimately found great psychological/emotional benefit in that.
Re: aging, I don't know what the future holds for me and my condition -- it is progressive and can be life threatening. Most patients have a reasonably good prognosis with appropriate treatment, but outcomes are much worse for a not-insignificant percentage. I try not to worry about that too much (even if I were healthy I could get hit by a bus tomorrow, ya know?)... I have a good doc, which is key, and she works *with* me, which is key, and I take great comfort from knowing that we are monitoring my status appropriately and will be on top of any negative changes/trends quickly. However, I also try not to take anything for granted these days - I find myself being more mindful and appreciative of what I am able to do during good days, knowing that those days are finite and precious.
And actually, that awareness is the #1 thing I'm grateful for in this whole journey... because ultimately everyone's days are finite, and my illness helped me really wake up to that and internalize it and appreciate the hell out of the good things in my life.
Good luck and very best wishes to you.
posted by somanyamys at 8:17 AM on March 5, 2019 [13 favorites]
I think Esme Wang (who has late stage Lyme disease) has written a fair amount about living with a chronic illness while still being a writer, such as "creating a healthy writing practice when your health doesn't want to cooperate".
posted by spamandkimchi at 8:23 AM on March 5, 2019 [2 favorites]
posted by spamandkimchi at 8:23 AM on March 5, 2019 [2 favorites]
I'm 33 and have type 1 diabetes which doesn't prevent me from work, but also a whole host of other hormonal and psych issues that make routine work extremely difficult. It took probably 10 years for me to figure out what works for me and an employer that would offer me a lot of flexibility. It's a new normal?
I also feel like my husband picks up a lot of slack. Make sure your husband knows you see the work and value it? For a while it was tough for us because I'd say thank you and he'd tell me I didn't have to say thank you because we were a team and he was doing his part. Eventually he felt worn out and needed that validation. Make sure you communicate.
If you ever want to reach out, feel free.
posted by Bistyfrass at 8:34 AM on March 5, 2019
I also feel like my husband picks up a lot of slack. Make sure your husband knows you see the work and value it? For a while it was tough for us because I'd say thank you and he'd tell me I didn't have to say thank you because we were a team and he was doing his part. Eventually he felt worn out and needed that validation. Make sure you communicate.
If you ever want to reach out, feel free.
posted by Bistyfrass at 8:34 AM on March 5, 2019
Obviously the support groups online tilt heavily towards the newly diagnosed...
I think this bears repeating because part of the reason it's true is that many people eventually move past the stage of needing intense, issue-specific support and no longer feel the urge to reach out and connect so constantly, if at all. It's a very very common pattern (compare "new baby" forums/blogs to "older kid" ones, for example), and seeing it here is actually a positive indication that the support groups and blogs and so on are successfully acting as bridges to lives people feel more in control of. They figure things out and just kind of run out of stuff to keep talking about, so they're not as active and their posts/threads don't show up prominently, or they make close friends and take the conversations to a more private place, or maybe they do discover a passion for continuing to engage on the topic but there're always so many new people with questions and big emotional needs that a lot of their energy goes toward engaging with those folks. In any case, the net effect is that one has to look a lot harder for the kinds of examples you want (so I'm glad you're here now asking this).
posted by teremala at 10:15 AM on March 5, 2019 [5 favorites]
I think this bears repeating because part of the reason it's true is that many people eventually move past the stage of needing intense, issue-specific support and no longer feel the urge to reach out and connect so constantly, if at all. It's a very very common pattern (compare "new baby" forums/blogs to "older kid" ones, for example), and seeing it here is actually a positive indication that the support groups and blogs and so on are successfully acting as bridges to lives people feel more in control of. They figure things out and just kind of run out of stuff to keep talking about, so they're not as active and their posts/threads don't show up prominently, or they make close friends and take the conversations to a more private place, or maybe they do discover a passion for continuing to engage on the topic but there're always so many new people with questions and big emotional needs that a lot of their energy goes toward engaging with those folks. In any case, the net effect is that one has to look a lot harder for the kinds of examples you want (so I'm glad you're here now asking this).
posted by teremala at 10:15 AM on March 5, 2019 [5 favorites]
Book rec: Living With The Enemy by Ray Owen
Totally agree with Wilder about a grieving process. There is a meaningful life with a chronic illness, but first you grieve the life you thought you were going to live.
As for the aging process, it's very difficult to predict. My mother has had chronic physical health issues since her 30s. For the early years she found it very difficult; then she made changes with her work, with what she was doing, and from her mid-40s she actually improved (not through any medical changes, but by making peace with what she could and couldn't do and looking after herself). It's only now, in her later 60s that her physical condition is back to being as bad as it was in her 30s; and being retired she finds it much easier to deal with.
posted by Vortisaur at 10:19 AM on March 5, 2019 [2 favorites]
Totally agree with Wilder about a grieving process. There is a meaningful life with a chronic illness, but first you grieve the life you thought you were going to live.
As for the aging process, it's very difficult to predict. My mother has had chronic physical health issues since her 30s. For the early years she found it very difficult; then she made changes with her work, with what she was doing, and from her mid-40s she actually improved (not through any medical changes, but by making peace with what she could and couldn't do and looking after herself). It's only now, in her later 60s that her physical condition is back to being as bad as it was in her 30s; and being retired she finds it much easier to deal with.
posted by Vortisaur at 10:19 AM on March 5, 2019 [2 favorites]
As a well-meaning but previously ignorant friend, please do let your friends know what they can do to support/interact with you when you're comfortable doing that. For example, I have a weekly Skype video chat with a good friend who is both physically limited and far away. If she says "bad night" we don't chat.
posted by HaveYouTriedRebooting at 2:10 PM on March 5, 2019 [3 favorites]
posted by HaveYouTriedRebooting at 2:10 PM on March 5, 2019 [3 favorites]
Twenty-two years ago, in my mid-40s and in the midst of an active life with a nifty career (no partner -- I was and still am living solo), I got sick with a slowly progressive chronic illness and had to give it all up and go on disability. I'm mostly homebound now.
From the outside, my life now must look quite pathetic -- day after day, I struggle to get of bed to deal with another day mostly alone, doing nothing of any apparent worth or significance, hoping to find new little ways to cope with a smorgasbord of moderate pains, discomforts and new limitations. I feel the day is a success if I can handle the basics like scooping the cat boxes and keeping myself fed. Never is there any vacation, no travel, no new experiences, no hobbies (I've tried so many, but even crocheting and jigsaw puzzles are too exhausting), no projects or achievements, nor any plans to look forward to any of that sort of stuff. And yet --
Life is sweet. Even on the bad days, I (usually) feel a much deeper contentment with my life than I did during the healthy years of activity and achievement.
When I first realized that this illness was going to with me for the duration, and that it was more likely to get slowly worse than ever better, I wondered if it would be possible to be "happy" with such a life. Obviously, it would be easy as pie to be miserable, but would it be possible to be happy? I decided to try to find out. So each day is part of my long-term experiment, designed to test the hypothesis that I can live a good life even with this illness. So far, 22 years since I had to give up work and so much else, it looks like the answer might be "yes." I'm not quite sure how I got here, but strangely enough, life is a hoot.
posted by Corvid at 3:25 PM on March 5, 2019 [11 favorites]
From the outside, my life now must look quite pathetic -- day after day, I struggle to get of bed to deal with another day mostly alone, doing nothing of any apparent worth or significance, hoping to find new little ways to cope with a smorgasbord of moderate pains, discomforts and new limitations. I feel the day is a success if I can handle the basics like scooping the cat boxes and keeping myself fed. Never is there any vacation, no travel, no new experiences, no hobbies (I've tried so many, but even crocheting and jigsaw puzzles are too exhausting), no projects or achievements, nor any plans to look forward to any of that sort of stuff. And yet --
Life is sweet. Even on the bad days, I (usually) feel a much deeper contentment with my life than I did during the healthy years of activity and achievement.
When I first realized that this illness was going to with me for the duration, and that it was more likely to get slowly worse than ever better, I wondered if it would be possible to be "happy" with such a life. Obviously, it would be easy as pie to be miserable, but would it be possible to be happy? I decided to try to find out. So each day is part of my long-term experiment, designed to test the hypothesis that I can live a good life even with this illness. So far, 22 years since I had to give up work and so much else, it looks like the answer might be "yes." I'm not quite sure how I got here, but strangely enough, life is a hoot.
posted by Corvid at 3:25 PM on March 5, 2019 [11 favorites]
I am in my twenties but was diagnosed as a teenager, and have been dealing with my chronic illness for 10+ years. So I can offer a little insight, I think.
I kind of consider myself lucky, because I became chronically ill before my life really began. So, my idea of what life looks like has always been centered around my needs and limitations as a chronically ill person. In your teens and early twenties, you're figuring out what your life is going to look like--and I arranged everything with the knowledge that I was possibly, probably going to be chronically ill the rest of my life. You're going to have to do that now. It's going to be harder because you had plans for your life, you know how you wanted it to look, and this probably isn't it. You're going to be disappointed. You're going to mourn your former life and what-could-have-been. Your life is going to look very different going forward. But realize that different doesn't have to mean worse.
What you are going to have to do is figure out your limits, and arrange your life within those limits. That's going to be hard, and frustrating, and confusing. But you can do it, and you can find plenty of fulfillment in those limits. You can also find that some of your limits may end up becoming strengths. I've become extremely good at planning, time management, organization, etc. because I have to be in order to manage my chronic illness. I'm in a PhD program and struggling a lot less than my peers--despite still dealing with my chronic illness--because I have those skills.
You've just been diagnosed. You feel horrible right now because you don't have practice managing your chronic illness, you don't have the skills you need to facilitate your best. You've also just started managing your symptoms, which means you probably don't have a clear idea yet what helps you, what triggers your flare ups, etc. I know what foods trigger me, how much sleep I need, what facilitates good sleep, what increases pain, what decreases it, what kind of environment I need to be able to focus, what clothes trigger symptoms, how much energy and what kind different chores take, the time of day I have more or less energy, etc etc etc. I've had a long time to build routines that reduce my symptoms as much as possible and give me stability. You're just figuring that out! I can't guarantee you'll get better, but it's pretty likely that after a while you'll find routines that help. Not necessarily cure you, but give you a little more energy, a little less pain, let you do a little more. Not to mention medical symptom management, which can be effective in improving your functioning even if it doesn't cure you!
Your life is also probably not currently arranged to be efficient for a chronically ill person. I've arrange my life to make things easier for myself in any way I can. Smaller things include using a stool in the shower or by the stove, buying frozen pre-cooked chicken, wiping down pans with paper towls and reusing them a few times before washing, putting all my night time routine things in one place to keep me from having to walk all over the apartment, keeping a bag with all the essentials next to my work station, using a 32oz bottle so I don't have to get up to fill it as often, etc. Bigger things include living in a small apartment with no stairs, arranging classes/meetings so that I do all of my work on three long days of the week and have two extra days off to recover (which I've found works better than having stuff every work day--if I leave the house that day, I'm not getting anything done when I get back), using a power wheelchair for outings that involve a lot of walking (such as museum trips) and the scooters at the grocery store, etc. It took me a long time to figure out what worked for me, but there are ways to make your life more efficient and friendly to you as a chronically ill person. You're going to learn how you can rearrange your life to make this take a little less energy, make that a little less painful, make this a little easier, etc.
All of that is about how to make your life easier and more productive. But it's also important to make it more fulfilling, too. All of the above will help with that--you need the energy to do things you love, after all! But you are going to have to find other things you enjoy that don't take up quite so much of your energy. That doesn't mean you have to totally give up what you already enjoy--use a wheelchair at the museum, go for tiny little walks when you can. But part of what's made my life fulfilling is I've found things to fill it that don't require me to have a ton of energy. My life looks pretty different from my friends and classmates--I don't go to parties or bars or rock climbing or Crossfit. I read, and draw, and write stories, and knit, and crochet, and listen to podcasts, and play video games. I find joy in all of those things, and they're things I can usually do with pretty low energy. Sometimes I don't have the focus, but most days I can do one of those things, and enjoy it.
I also find fulfillment by finding things to do with my family and friends that don't take a ton of energy. Part of this requires being really explicit about your limits, and it does depend on people respecting that. I join my family for dinner once or twice a week, and they understand that sometimes literally all I can do is eat dinner and then leave less than an hour after arriving. My friends know that when I hang out it may only be for an hour or two. And we do things like play board games, watch movies, or play video games. Sometimes we go out places, but they know I can't do a lot, and might have to leave early. I've found things to do with my partner that don't require a ton of energy: play cooperative video games, listen to podcasts, play with our cat together, keep them company while they cook, watch movies.
I think a lot of people might find my life boring, but I find it very fulfilling. I don't know if this is necessarily something you can just switch on or off, but I get a lot of enjoyment out of either creating things (writing, reading, drawing, knitting, crocheting) or consuming creative works (podcats, movies, video games, TV). I think there's a lot to be said for contentment--not stagnation, but a quiet life full of nice, interesting things. It may not be exciting, but it's definitely fulfilling.
Memail me if you ever want to talk about it. I know by many measures I'm still just a kid, but I feel like I've gotten to a good place with my chronic illness and what it means for my life. If anything, I hope that gives you some confidence for your future.
posted by brook horse at 6:01 PM on March 5, 2019 [7 favorites]
I kind of consider myself lucky, because I became chronically ill before my life really began. So, my idea of what life looks like has always been centered around my needs and limitations as a chronically ill person. In your teens and early twenties, you're figuring out what your life is going to look like--and I arranged everything with the knowledge that I was possibly, probably going to be chronically ill the rest of my life. You're going to have to do that now. It's going to be harder because you had plans for your life, you know how you wanted it to look, and this probably isn't it. You're going to be disappointed. You're going to mourn your former life and what-could-have-been. Your life is going to look very different going forward. But realize that different doesn't have to mean worse.
What you are going to have to do is figure out your limits, and arrange your life within those limits. That's going to be hard, and frustrating, and confusing. But you can do it, and you can find plenty of fulfillment in those limits. You can also find that some of your limits may end up becoming strengths. I've become extremely good at planning, time management, organization, etc. because I have to be in order to manage my chronic illness. I'm in a PhD program and struggling a lot less than my peers--despite still dealing with my chronic illness--because I have those skills.
You've just been diagnosed. You feel horrible right now because you don't have practice managing your chronic illness, you don't have the skills you need to facilitate your best. You've also just started managing your symptoms, which means you probably don't have a clear idea yet what helps you, what triggers your flare ups, etc. I know what foods trigger me, how much sleep I need, what facilitates good sleep, what increases pain, what decreases it, what kind of environment I need to be able to focus, what clothes trigger symptoms, how much energy and what kind different chores take, the time of day I have more or less energy, etc etc etc. I've had a long time to build routines that reduce my symptoms as much as possible and give me stability. You're just figuring that out! I can't guarantee you'll get better, but it's pretty likely that after a while you'll find routines that help. Not necessarily cure you, but give you a little more energy, a little less pain, let you do a little more. Not to mention medical symptom management, which can be effective in improving your functioning even if it doesn't cure you!
Your life is also probably not currently arranged to be efficient for a chronically ill person. I've arrange my life to make things easier for myself in any way I can. Smaller things include using a stool in the shower or by the stove, buying frozen pre-cooked chicken, wiping down pans with paper towls and reusing them a few times before washing, putting all my night time routine things in one place to keep me from having to walk all over the apartment, keeping a bag with all the essentials next to my work station, using a 32oz bottle so I don't have to get up to fill it as often, etc. Bigger things include living in a small apartment with no stairs, arranging classes/meetings so that I do all of my work on three long days of the week and have two extra days off to recover (which I've found works better than having stuff every work day--if I leave the house that day, I'm not getting anything done when I get back), using a power wheelchair for outings that involve a lot of walking (such as museum trips) and the scooters at the grocery store, etc. It took me a long time to figure out what worked for me, but there are ways to make your life more efficient and friendly to you as a chronically ill person. You're going to learn how you can rearrange your life to make this take a little less energy, make that a little less painful, make this a little easier, etc.
All of that is about how to make your life easier and more productive. But it's also important to make it more fulfilling, too. All of the above will help with that--you need the energy to do things you love, after all! But you are going to have to find other things you enjoy that don't take up quite so much of your energy. That doesn't mean you have to totally give up what you already enjoy--use a wheelchair at the museum, go for tiny little walks when you can. But part of what's made my life fulfilling is I've found things to fill it that don't require me to have a ton of energy. My life looks pretty different from my friends and classmates--I don't go to parties or bars or rock climbing or Crossfit. I read, and draw, and write stories, and knit, and crochet, and listen to podcasts, and play video games. I find joy in all of those things, and they're things I can usually do with pretty low energy. Sometimes I don't have the focus, but most days I can do one of those things, and enjoy it.
I also find fulfillment by finding things to do with my family and friends that don't take a ton of energy. Part of this requires being really explicit about your limits, and it does depend on people respecting that. I join my family for dinner once or twice a week, and they understand that sometimes literally all I can do is eat dinner and then leave less than an hour after arriving. My friends know that when I hang out it may only be for an hour or two. And we do things like play board games, watch movies, or play video games. Sometimes we go out places, but they know I can't do a lot, and might have to leave early. I've found things to do with my partner that don't require a ton of energy: play cooperative video games, listen to podcasts, play with our cat together, keep them company while they cook, watch movies.
I think a lot of people might find my life boring, but I find it very fulfilling. I don't know if this is necessarily something you can just switch on or off, but I get a lot of enjoyment out of either creating things (writing, reading, drawing, knitting, crocheting) or consuming creative works (podcats, movies, video games, TV). I think there's a lot to be said for contentment--not stagnation, but a quiet life full of nice, interesting things. It may not be exciting, but it's definitely fulfilling.
Memail me if you ever want to talk about it. I know by many measures I'm still just a kid, but I feel like I've gotten to a good place with my chronic illness and what it means for my life. If anything, I hope that gives you some confidence for your future.
posted by brook horse at 6:01 PM on March 5, 2019 [7 favorites]
I was diagnosed nearly 5 years ago, in my mid/late 30s.
One thing that really has been good for me is realising how much better I find life now that I live within my limits. I suffer a lot of fatigue, I can't over do things, I live alone with no support and i still work full time. But I no longer expect too much of myself. I used to feel guilty about things I wasn't doing (tonnes of socialising, travelling, working out, evening classes etc). Now I don't do any of those things and I am supremely content at home with my cats doing what I want to do, not what a 30 something apparently wants to do. I crochet, quilt, read, watch netflix, nap with the cats. I'm perfectly content.
Chronic illness gave me permission to be the lazy, bookish cat lady recluse I always wanted to be. It's nice to have opportunities but they all have an opportunity cost and I just used to find it so overwhelming trying to decide what to do.
posted by kitten magic at 7:04 PM on March 5, 2019 [3 favorites]
One thing that really has been good for me is realising how much better I find life now that I live within my limits. I suffer a lot of fatigue, I can't over do things, I live alone with no support and i still work full time. But I no longer expect too much of myself. I used to feel guilty about things I wasn't doing (tonnes of socialising, travelling, working out, evening classes etc). Now I don't do any of those things and I am supremely content at home with my cats doing what I want to do, not what a 30 something apparently wants to do. I crochet, quilt, read, watch netflix, nap with the cats. I'm perfectly content.
Chronic illness gave me permission to be the lazy, bookish cat lady recluse I always wanted to be. It's nice to have opportunities but they all have an opportunity cost and I just used to find it so overwhelming trying to decide what to do.
posted by kitten magic at 7:04 PM on March 5, 2019 [3 favorites]
Stephen Hawking lived with ALS for about fifty years. Frida Kahlo had chronic pain for most of her life. Michael J. Fox has had Parkinson's. Kathleen Hannah has long-term chronic Lyme disease (there's an amazing documentary that talks about it, called The Punk Singer). Lady Gaga has had fibromyalgia for about 5 years. Venus Williams has had Sjogren's for about seven.
On the less famous front, Cort Johnson has something like ME/CFS and puts out a really amazing research blog called Health Rising. Vidyamalaya Burch has had chronic pain for 40 years and puts out a lot of material about chronic pain and meditation. Rachel Marie White has been living with chronic illness and pain for about six years and puts out amazing yoga classes for people with chronic illness on Youtube and elsewhere. The people who put out the Curable Health app (which helps people work with chronic pain) are all people who live/lived long term with pain themselves.
Also, most of the forums you'll find the first times you google your illness are usually going to be super scary forums full of people talking about how horrible their symptoms are. (The Spoonie Yoga Facebook community is an exception, and I've found other exceptions in groups devoted to exercise for other chronic conditions.)
It's really hard to accept pain and limitation. But your life is definitely not over.
posted by hungrytiger at 7:45 PM on March 5, 2019 [3 favorites]
On the less famous front, Cort Johnson has something like ME/CFS and puts out a really amazing research blog called Health Rising. Vidyamalaya Burch has had chronic pain for 40 years and puts out a lot of material about chronic pain and meditation. Rachel Marie White has been living with chronic illness and pain for about six years and puts out amazing yoga classes for people with chronic illness on Youtube and elsewhere. The people who put out the Curable Health app (which helps people work with chronic pain) are all people who live/lived long term with pain themselves.
Also, most of the forums you'll find the first times you google your illness are usually going to be super scary forums full of people talking about how horrible their symptoms are. (The Spoonie Yoga Facebook community is an exception, and I've found other exceptions in groups devoted to exercise for other chronic conditions.)
It's really hard to accept pain and limitation. But your life is definitely not over.
posted by hungrytiger at 7:45 PM on March 5, 2019 [3 favorites]
(edit: I'm not trying to dis chronic illness forums, just saying that many can be distressing to read, and don't present a fuller picture of what it's like to live long-term with chronic illness.)
posted by hungrytiger at 7:47 PM on March 5, 2019
posted by hungrytiger at 7:47 PM on March 5, 2019
I have been gradually tapering work downwards for the last 20 years since diagnosis of my chronic illness, which often has acute, body slamming flare ups. There is a pattern I’ve seen in those around me in the early aftermath of diagnosis of chronic ailment - the endless googling, online chat rooms, reading a lot on line, participating in a bunch of alternative [and $$$] therapies, being susceptible to miracle diet touters, joining way too many support groups etc.
The first few years felt like I was in the chronic illness space as a career in the amount of time I spent a week looking up things online about the disease and going to appointments.
I realised a few years later, that I was also vulnerable early after diagnosis to others’ well meaning suggestions because it was a form of care they were offering and I felt it looked bad to sit and suffer and not try new strategies. Not trying. Wallowing. So yes, there’s a reason people generally aren’t all over the websites you are visiting after a few years. I am now following sites and forums on the disease that have been peer-reviewed at the highest standards. And I’ve stopped thinking there’s a magic diet and mental space I need to find.
I have kept yoga, [restorative models instead of the vigorous Astanga] dietary changes [but not the whole gluten bad, multiple $$ supplements regime that every naturopath will push] and psychotherapy, but dropped all the awful colour, aura, reiki, fengshui, colloidal silver, crystals, aromatherapy stuff that was initially pushed by well meaning acquaintances. I went to the Mayo Clinic and got a thorough analysis of my whole system and kept up the research and reading about surgical approaches.
I guess after this amount of time the big difference in the way I am living with chronic illness is that I have stopped working, and that is really the hardest thing of all. I also lost a long marriage in this journey, so I’d say building a sense of teamwork and finding ways to manage your relationship are vital. Resentment builds up from both sides and it needs to be faced directly and intentionally. Both partners need to recognise the diagnosis and be supportive of each other. I am much more able to identify my needs and ask for them to be met earlier, rather than struggle on in a pit of despair. My post marriage partner has been much more aware and supportive, and because I am in a more mentally secure part of my self-care journey, I am too.
The lack of work and feelings of lost productivity are hardest, and finding things that are meaningful to do is important. Not beating yourself up for being absent sometimes, for failing to get things done on time, or letting things fall away is also part of the learning.
Keeping friendships is vital as is keeping attached to ‘real world’ things, outside of your entrapped feelings helps mood swings and despair. Managing realistic vs dream activities is a part of self care I have learned more about as the years go by, and so I have less anxiety about saying Yes or No to things because I know more of my limits.
posted by honey-barbara at 9:53 PM on March 5, 2019 [3 favorites]
The first few years felt like I was in the chronic illness space as a career in the amount of time I spent a week looking up things online about the disease and going to appointments.
I realised a few years later, that I was also vulnerable early after diagnosis to others’ well meaning suggestions because it was a form of care they were offering and I felt it looked bad to sit and suffer and not try new strategies. Not trying. Wallowing. So yes, there’s a reason people generally aren’t all over the websites you are visiting after a few years. I am now following sites and forums on the disease that have been peer-reviewed at the highest standards. And I’ve stopped thinking there’s a magic diet and mental space I need to find.
I have kept yoga, [restorative models instead of the vigorous Astanga] dietary changes [but not the whole gluten bad, multiple $$ supplements regime that every naturopath will push] and psychotherapy, but dropped all the awful colour, aura, reiki, fengshui, colloidal silver, crystals, aromatherapy stuff that was initially pushed by well meaning acquaintances. I went to the Mayo Clinic and got a thorough analysis of my whole system and kept up the research and reading about surgical approaches.
I guess after this amount of time the big difference in the way I am living with chronic illness is that I have stopped working, and that is really the hardest thing of all. I also lost a long marriage in this journey, so I’d say building a sense of teamwork and finding ways to manage your relationship are vital. Resentment builds up from both sides and it needs to be faced directly and intentionally. Both partners need to recognise the diagnosis and be supportive of each other. I am much more able to identify my needs and ask for them to be met earlier, rather than struggle on in a pit of despair. My post marriage partner has been much more aware and supportive, and because I am in a more mentally secure part of my self-care journey, I am too.
The lack of work and feelings of lost productivity are hardest, and finding things that are meaningful to do is important. Not beating yourself up for being absent sometimes, for failing to get things done on time, or letting things fall away is also part of the learning.
Keeping friendships is vital as is keeping attached to ‘real world’ things, outside of your entrapped feelings helps mood swings and despair. Managing realistic vs dream activities is a part of self care I have learned more about as the years go by, and so I have less anxiety about saying Yes or No to things because I know more of my limits.
posted by honey-barbara at 9:53 PM on March 5, 2019 [3 favorites]
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There are people who remain employed even while experiencing chronic illness (eg inflammatory arthritis, multiple sclerosis, fibromyalgia). It's not easy - and it is no shame to admit that this may not be you. Some of the factors that help people remain employed are: less physically demanding work, flexible work, part-time work, more control over how and when they do their work. For many people, a diagnosis like this will change their career plans.
For support, in addition to comments here, I would also look to organizations serving your condition. The MS society in the US, for example, has a series of excellent videos about employment and MS. The Arthritis Society in Canada has a web-resource on arthritis and employment that they are currently adding to with podcasts, etc.
if you would like me to send you specific links, please feel free to memail me.
posted by jb at 6:20 AM on March 5, 2019 [5 favorites]