Grief about your health condition or disability

SE9St8
SE9St8 Scope Member Posts: 21 Contributor
in Talk about your impairment
Hi I have always been disabled but recently became severely ill and became even more physically disabled as well. I've had chronic fatigue for 2 years and 4 months now due to long covid.

I can't work and had to drop out of university 2 years ago (though I hope to go back this year). And I don't have many friends anymore as being disabled makes you not you anymore apperantly (sarcasm).

I was wondering how you guys deal with grief realated to your health condition/disability etc :)

As in grieving about:
💙 Not being able to do the same things anymore
💙 Having to have someone care for you etc
💙 Being constantly ill and in chronic pain
💙 being very worried about the future
💙 not being able to accomplish your simple dreams anymore
💙 seeing everyone move on without you
💙 being left behind by society
💙 being left out by friends etc or them not even talking to you anymore

I hope I have explained myself well enough :) please let me know any ways to deal with it xx

Comments

  • Spoonbill
    Spoonbill Online Community Member Posts: 67 Contributor
    edited February 2023
    Hi, SE9st8. Sorry to hear it's been a tough time. While I can't speak from a position of the 'most disabled' person in the room(!), and others may have more grounded, immediate suggestions, I have delved into thoughts and movements around trauma and what's commonly termed 'healing justice', which overlaps with peer support.
    You might find the work of disabled activists useful, e.g. Sonia Renee Taylor's thebodyisnotanapology.com/
    For me, it becomes difficult to separate these feelings from the socio-political, so depending on your existing leanings you might find some activists ideas a challenge. Alternatively, you might find solidarity in more mainstream campaigns, e.g. www.rofa.org.uk/
    FWIW, I try to accept that there are limits to my individual ability to open closed minds, whereas communities of those with common experiences (user-led groups) have brought people together in mutual support and activities for restoration, which can increase resilience to trauma experienced elsewhere. Organising this can be difficult, so you might start by looking for existing groups/organisations. Cities seem best placed for this, some more than others, but it depends where you are, whether your disability is 'invisible' etc. If useful, I'd be happy to see if I can suggest anything more specific for your situation (DM if preferred). (e.g. for London I might suggest healingjusticeldn.org/)
    Hope that didn't drift too far off-topic. o:)
  • Sandy_123
    Sandy_123 Scope Member Posts: 63,002 Championing
    Hi @SE9St8 it can be very frustrating not doing the things you want or when you do, you then have to suffer in pain for it, or reduced mobility in my case. 
    Best to focus on what you can do
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,714 Championing
    Hello @SE9St8 How are you doing today?

    You've had some very thoughtful, touching responses here that I think provide alternative perspectives and ways of coping with the feelings you're negotiating. I was chronically ill for a long period in my late teens and twenties and remember yearning to be 'normal', to be like my peers who I could see progressing and doing the things I had expected to do too. I think these are perfectly valid thoughts and I'd encourage you to read about the 'biographical disruption' theory Mike Bury coined in 1982 which helped me better understand why I was experiencing this grief, as you rightly describe it. 

    I personally found talking therapy went a long way to helping me, but I understand it's not for everyone. Just speaking to someone beyond my immediate circle and being honest about my emotions - anger, frustration, upset, released a lot of pent up angst. Plus, concentrating on the things that were within my control and do-able  <3

    It would be lovely to speak some more, so whenever you fancy a chat we'd love to 'see' you!
  • SE9St8
    SE9St8 Scope Member Posts: 21 Contributor
    WelshBlue said:
    Not being able to do the same things anymore is the part I've found hardest to come to terms with.
    A physically demanding job which kept me very fit, which I loved and coaching kids from 6 to 18 at football.

    Now I struggle to change a light bulb and struggle to walk 50 metres without stopping.  
    Acceptance is key but not always easy when chronic pain erodes away at your self worth.

    For me, being 56 and able to look back on younger days it's easier than those who are younger and having no quality of life as such and no prospect of it being easier; whether it be chronic pain and or emotional distress/ physical disability ...  I count myself very lucky in a lot of respects ... I still feel sorry for myself at times but that's human I guess.


    Aw thank you so much for this help. It has helped me so much! I guess knowing grief is a cycle that always comes and goes is good, everybody will always not accept their health condition and suffering throughout their life and that's normal but sad :(. Your experience is alwayd valid and you seem like an amazing person :)
  • SE9St8
    SE9St8 Scope Member Posts: 21 Contributor
    Spoonbill said:
    Hi, SE9st8. Sorry to hear it's been a tough time. While I can't speak from a position of the 'most disabled' person in the room(!), and others may have more grounded, immediate suggestions, I have delved into thoughts and movements around trauma and what's commonly termed 'healing justice', which overlaps with peer support.
    You might find the work of disabled activists useful, e.g. Sonia Renee Taylor's thebodyisnotanapology.com/
    For me, it becomes difficult to separate these feelings from the socio-political, so depending on your existing leanings you might find some activists ideas a challenge. Alternatively, you might find solidarity in more mainstream campaigns, e.g. www.rofa.org.uk/
    FWIW, I try to accept that there are limits to my individual ability to open closed minds, whereas communities of those with common experiences (user-led groups) have brought people together in mutual support and activities for restoration, which can increase resilience to trauma experienced elsewhere. Organising this can be difficult, so you might start by looking for existing groups/organisations. Cities seem best placed for this, some more than others, but it depends where you are, whether your disability is 'invisible' etc. If useful, I'd be happy to see if I can suggest anything more specific for your situation (DM if preferred). (e.g. for London I might suggest healingjusticeldn.org/)
    Hope that didn't drift too far off-topic. o:)
    Hi oh my gosh this is amazing, i will check these all out. I live in a town and don't knoe if they have many things but I come to London often to see my boyfriend so the London groups would be amazing!!

    Healing justice sounds like an interesting term I'm going to investigate.

    I think it would help being surrounded by people who truely do understand and can all group together for happiness. I know there are long covid groups on facebook and I'm in many of them. I do find it hard to relate to some of the people in terms of age and life stage differences
  • SE9St8
    SE9St8 Scope Member Posts: 21 Contributor
    Starlingbird said:
    Hi @SE9St8 I also have CFS (unfortunately, I did not get better and have now had it for half of my life) and also had to drop out of uni. I once joined a local CFS group but had to discontinue that due to the intense negativity. I really don't think looking at what I have lost is helpful to me. 

    This by @Teddybear is also my way of thinking:
    "We sat down and made a plan of what she could do now never thinking or comparing with what she could do before".

    Yearning for the past will only result in feeling hopeless, helpless and depressed. It does hit me quite frequently, but I batter it back down👍

    My analogy is it's like baking a cake (bear with me!). Let's say I want a chocolate gateaux, but I have the basic ingredients for a Victoria sponge cake. I can sit and long for a chocolate cake that I can never have, or I can crack on and make that Victoria sponge cake (which will still be delicious)!

    Life dealt me a hand of cards and I just do the best I can with that hand. Keep fighting, take each day as it comes and try to achieve something every day (no matter how small). 
    Hi firstly I want to say your dog is adorable! I have a dog called betty who is a greyhound. Dogs help so much! She helps me feel much safer, comfortable and happy.

    I also want to say thank you so much for your comment. It's sooo hard dealing with chronic fatigue syndrome and you often feel very alone. Sadly most of my friends left and don't make the effort anymore since I got ill. 

    That's such a shame about yhe group :(. That makes sense though, it would be too much as many people have lost everything that makes them them and everything they used to have in their lives.

    I'm so sorry to hear you had to drop out of uni.  I have for the past 2 years too and am worried will I ever be well enough to go back aka will I ever be able to care for myself fully and cope with the workload. My uni has very good accessibility but then issue is no energy :(

    Ooo that analogy is good thank you I'll save it. It's so hard not to look back especially as I'm only 3 years in and have lost my uni, job and also the ability to care for myself and many friends. But I will try better to focus on the now hehe

    Aww that's amazing thank you so much, this has helped me so much and made me feel understood :)
  • SE9St8
    SE9St8 Scope Member Posts: 21 Contributor
    Sandy_123 said:
    Hi @SE9St8 it can be very frustrating not doing the things you want or when you do, you then have to suffer in pain for it, or reduced mobility in my case. 
    Best to focus on what you can do
    Aw thank you so much! Yes it is and very depressing too sadly.

    That's so true I will try better at this!
  • SE9St8
    SE9St8 Scope Member Posts: 21 Contributor
    Cher_Scope said:
    Hello @SE9St8 How are you doing today?

    You've had some very thoughtful, touching responses here that I think provide alternative perspectives and ways of coping with the feelings you're negotiating. I was chronically ill for a long period in my late teens and twenties and remember yearning to be 'normal', to be like my peers who I could see progressing and doing the things I had expected to do too. I think these are perfectly valid thoughts and I'd encourage you to read about the 'biographical disruption' theory Mike Bury coined in 1982 which helped me better understand why I was experiencing this grief, as you rightly describe it. 

    I personally found talking therapy went a long way to helping me, but I understand it's not for everyone. Just speaking to someone beyond my immediate circle and being honest about my emotions - anger, frustration, upset, released a lot of pent up angst. Plus, concentrating on the things that were within my control and do-able  <3

    It would be lovely to speak some more, so whenever you fancy a chat we'd love to 'see' you!
    Hi thank you so much! Sorry for replying very late to everybody, I've been very down recently but am starting to feel up again :)

    I feel this so much! I do feel very much left behind and isolated as all my friends have now graduated and have got jobs. Some have been engaged or have babies now and I'm just sat here wondering will I survive the day.

    Ooo thank you i will read this! It will help so much :)

    That is good advice hehe I want to go to counselling again too. Hehe it takes so long to get a referral so I don't know if I have the energy for it, but ai do want to have some, so will try my hardest for a referral again hehe :)

    Aw thank you! You too 
  • Hope123
    Hope123 Online Community Member Posts: 9 Listener
    Thank you for asking this question - it's what I struggle with too.  I also have long covid (3 years), 'though my GP refuses to diagnose CFS (I know, I should show them the NICE criteria as I meet them) so I'm on a 9-month waiting list through ME Action.  The waiting around is very hard.  I'm also waiting for counselling but I'm hoping it's talking rather than CBT - the last time I tried that it was very rigid & didn't apply to my circumstances at all.  I do feel  invisible and would love to make new friends.  I'd love to have or even set up a long covid group in my area.  I'm trying to work out what to do about mobility aids & this uncertainty is also getting me down, plus I'm my son's carer so can't rest up in the 'expected ways'.  I also had to drop out of uni due to ME/CFS at around 19/20 which I can empathise was extremely difficult to have to do, & watching others move on in life.  As the mum of a young adult with autism I can attest that many young people have to take time out for all sorts of reasons, and that health absolutely comes first.  I really hope you're on a road to a good recovery and will be able to finish your course when it's the right time, and for yourself!

  • CookieM95
    CookieM95 Online Community Member Posts: 9 Listener
    Hi @SE9St8, 

    Sorry for the late comment but I have only just found this thread! 

    Firstly I want to say thank you because EVERYTHING you have described is exactly how I am feeling at the moment so as much as I am sorry you are going through this, it is nice to know I am not alone. 

    I too have become more disabled in the last few years at an alarming rate. I am now looking at being wheelchair-bound in the next few years. I am struggling with feelings of anger, resentment, fear, and insecurities mounting by the day. So much is changing and as a neurodiverse individual, it is terrifying. I have moved into a bungalow as I can no longer manage stairs, I previously had a package of care put in by social services which has now ended as I am deemed to not need it. I am trying to return to University in September to study creative writing, but this grief of what could have been, what should have been has killed my passion for writing. Being disabled has taken so much from us, but I guess my advice for both you and myself would be to try and reframe it. 

    We may be disabled but, to cope with it all, I try and think about all the things my neurodiversity and disabilities have given me. As much as every day is chronic pain, emotions that we are not quite sure how to deal with, and exhaustion both mentally and physically, it has made me aware of just how strong I am. It is HARD when your brain is willing but your body is not and I don't think that is something many people can understand. I think that we all need to be kind to ourselves and actually acknowledge how much it sucks. It is okay to not be okay sometimes, it is okay to have a ____ day and hibernate but we also need to fight that much harder. No, it is not fair at all, it shouldn't be this way but it is. 

    Someone once said to me that grief is like the ocean, it comes and goes in waves. Some are bigger than others, but they always pass. I think sometimes, unfortunately, we just have to ride the waves. 

    I hope my ramble made sense! 

    N

Categories