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14 'Sneaky' Ways Grief Affects People With Chronic Illness

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For many of those who are diagnosed with a chronic illness, going through the grieving process is a natural response. When you’re diagnosed with a serious, incurable health condition, life as you know it changes – and that can be incredibly jarring. You may have to give up certain activities or rethink certain dreams, and some struggle with the way illness causes their personality to change.

Grief is a process – one that’s rarely linear. It is totally normal to skip around between the five stages, and reaching “acceptance” doesn’t mean you’ll never struggle with denial, anger, bargaining or depression again. Grief can often sneak up on us in surprising ways, and at times when we least expect it. Mighty contributor Christina Baltais beautifully describes this in her essay, The Ongoing Process of Grief With Chronic Illness:

My grief is triggered when I experience reminders of what I can’t do, what I’ve lost forever and of my unfulfilled dreams that are very much still alive in my heart. I struggle with knowing what to do with all my dreams too. How long do I hold onto them for? Will they too just become one more drop in the ocean of things lost that I will soon come to grieve? I try to keep grief in one hand, and hold hope in the other, in a very clumsy teeter-totter balancing act. My hope can’t help but feel like a small light being turned on in a dark room some days.

Even though the grieving process can be one of the most difficult side effects of chronic illness, we wanted to remind you that you’re not alone, and your feelings are completely valid. We asked our Mighty community to share a “sneaky” way the grief of their illness affects them – and how they cope with it. You and your life may be different with chronic illness in the picture, but you are still just as worthy and valuable, and have so, so much to offer this world.

Here’s what our community shared with us:

  1. Whenever people share posts about ‘getting off your butt and working for a living.’ Or how their job or schooling gives them so much fulfillment. Sometimes it just slaps me across the face. Because I’ve always been a very education-based, career-based, motivated person. And right now my health doesn’t allow me to [go to] school or work. And it sucks. It makes me feel worthless. And sometimes it’s a daily struggle. But I have to remember my worth is so much more than my physical limitations.” – Megan M.
  2. My grief is tied very closely to envy and self-pity. As positive as I try to be and however I push myself to power through, I just can’t function the way I want to or the way healthy people do, and on my worst days it makes me feel jealous of what others can easily accomplish and sorry for myself. Grief to me is a process, constantly having to adjust my expectations for what I imagine is possible to achieve and experience in my life.” – Courey S.
  3. When I see my former classmates post about college graduation or the people I’m a mentor for talk about medical school. It just sucker punches me in the gut. I know I would have made an amazing doctor. I’m fairly good with patients, and medical knowledge sticks inside my brain. I was doing amazing things before my health failed me. I don’t know if I’ll ever get over that, honestly. I think it’ll always feel like a part of me has died. It’s something I’ve wanted my whole life… I’ve done all of these incredible things that are now just memories. I know I’ll do amazing things again, and I’m working towards that with my chemistry degree, but it will never be the same. There’s good in that as well. There is, even if it’s bittersweet.” – Alex P.
  4. Because of my illness, my husband and I decided not to have kids. I love my niece, nephews and friends’ kids, but with every new pregnancy I grieve for the family I always thought I’d have. Not enough to dull the excitement for the expecting family. Just a little private hurt.” – Stacey B.
  5. I actually didn’t realize I was grieving my former life until recently. I’ve been doing it since before I was actually diagnosed but had not realized it at all. I think just realizing that the feeling is grief is a good starting point. Instead of feeling sad and defeated about all the things I used to be able to do, I can now think, ‘Thanks brain for reminding me of how important my independence is. However, ____, ____ and ____ are how I am still independent. I have not stopped!’ And it helps.” – Paige W.
  6. The isolation and loneliness. People just don’t understand and don’t have time to sit around with you. My dogs are a huge support system. They are always there for you no matter what and show you unconditional love. They also motivate me to get up and moving.” – Leigh D.
  7. I see a lot of videos on social media advertising awesome play centers with ball pits and trampolines. Realistically I wouldn’t spend much time in a place like that if I were able-bodied, but it reminds me of all the fun things I can’t do that I don’t know if I’ll ever be able to do again. I tell myself that I get extra-warm-blanket-Netflix-nights and massages and warm showers and all of the more ‘fun’ things you have to do to manage an illness, reminding myself that limitations don’t make life any less beautiful and you can work around them to build a life worth living.” – Jillian S.
  8. I grieve ‘the old me’ as it often sneaks up on me daily. My chronic illness has impacted my career and I am currently unable to work. When I catch myself entering a moment of grief, I acknowledge the feeling and then seek out the positive things happening in my life at that particular moment. Finding gratitude even in the small things helps me to work through the difficult feelings associated with chronic illness.” – Angela M.
  9. I used to love hiking and cycling but because of my chronic illnesses I can’t do it any more. I coped with it by taking up new less-active hobbies. I got well into poetry and doing open mic poetry events.” – Sukie M.
  10. The grief can hit me out of nowhere. Sometimes I dose myself up on painkillers (within the prescribed levels, of course), and I go to bars with my friends. Once, I was standing on the dance floor when I felt a surge of pain, and I watched everyone else dance and have fun around me. It hit me then that I would never have this careless, dancing and partying experience, because I’ve had chronic pain since the age of 8. I’m now 18. It’s discouraging. I’ve missed out on a lot of things while growing up, but I’m trying my best to not miss anything else from now on.” – Amy C.
  11. Facebook Timehop gets me at times. I love seeing old memories of things that I used to do but it hurts that I’ll never be the same as I used to be.” – Leanne H.
  12. Two sneaky ways it affects me or hits: When I am dreaming and not impaired physically in them, then wake into a torture chamber of pain. I have not found a good way to deal with that other than having a pet you love whom you must get up and care for. Second, and a big one, is Facebook. Seeing how far friends have gone, things they do and accomplish, or even things like when a friend posted about the new roller coaster in Kennywood [Park]. I can no longer do those things. I want them for others but it is hard to watch. I take a Facebook break for days or even weeks when needed.” – Jaye N.G.
  13. It affects me because I have an identical twin and we can no longer look super alike because my chronic illnesses cause me to keep my hair short and have also caused me to use a walker. Plus seeing her live a healthy normal life. I cry and grieve over my old life. I cope by thinking this is how the cards were dealt for me and try to make the best out of this situation chronic illnesses have given me. I also think, ‘Well, now people aren’t going to call me the wrong name. Now they will know it’s me and not my sister when they see me in a store.’” – Danielle P.
  14. The desire for the pain to stop or even let up is unbearable some days. I try and focus on the beauty in my life but sometimes the pain is just [overwhelming]. I grieve the times I should have done all the things I could have done. At that time I had a false notion I had plenty of time to do them, so why rush. Now I’m afraid they will never happen. Some days the pain in my body and my heart are resounding and I just can’t fathom living my life like this. Then I look at my supportive husband and family and realize that I have to because my story, as painful as it may be, isn’t over yet.” – Valerie W.

If you’re struggling with the grief that can accompany chronic illness, you’re not alone. Read on for words of hope and wisdom from Mighty contributors who have been there:

Processing the Grief of Chronic Illness

How I Have Coped With the Losses of Chronic Illness

Moving Forward From the Grief That Accompanies Chronic Illness

How I Channeled My Chronic Illness Grief Into Something Good

Originally published: September 13, 2018
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