Chronic Illness Grief

By Ali Long

3 min read

Grief can occur in many ways, and this can affect one's mental health. I study social care in college. We learn a lot about grief in this course. There is a seven-stage model of grief founded by Kubler-Ross.

The seven stages are:

1. Shock and denial

I have been through this stage more than once. When I was first diagnosed it took months for me to believe that I actually have this lifelong illness with no cure. Sometimes, thoughts come into my mind like; what if I was misdiagnosed?

2. Pain and guilt

This is a stage that I go through on a weekly basis. I always feel emotional pain that I’m going to be sick forever. Even on good days, I feel emotional pain that this could be my life every day, but it’s not. I feel guilty a lot. Guilt for myself that I’m not going to have the life I thought I was. Guilt for my family and friends that I can be a burden at times. And that I’m not the same person I used to be.

3. Anger and bargaining

I feel angry that I am not in control of my life. Angry that I’m going to be sick forever. Having a life-long illness has led me to feel hopeless at times and vulnerable. For me, being vulnerable can be both good and bad. Bad because I simply don’t like being too vulnerable. But good because it allows me to ask for help. In my opinion, vulnerability makes you strong. Again, I go through this stage a lot.

4. Depression, loneliness, and reflection

This stage basically describes living with a chronic illness. I don’t feel depressed and lonely all the time. But it is a big part of living with a chronic illness. Having a chronic illness is quite isolating. I get sad about the life I used to live and about being in pain constantly, this is the reflection side of it. Often reflecting over the past year and how far I've come makes me happy.

5. Upward turn

For me, these are the good days I have. I will be in a good mood because I am feeling better than usual. This often doesn’t last very long. Either I get sad thinking about what I could do with my life if I felt this good all of the time or else my symptoms come back with.

6. Reconstruction

During this stage, I start making plans. What can I do to make my life better? I try to build up ways to be the best version of myself. Sometimes these plans can go on for some time but again the symptoms always stop me on my path.

7. Acceptance and hope

I go through phases of accepting my illness and my new life. Then I go through phases of not accepting it. Often when I accept it, I feel happy. Hope follows. I hope that one day there will be a cure. Or hope that my treatment will work better. Then there are days when I have no hope, on bad days I think that I'm going to be in this bed forever.

My experience

I have gone through Kubler-Ross' seven stages of grief, many, many times over the past two years. Which had a huge effect on my mental health, but it has also helped me understand other people and how they feel going through this. I grieve for the life I used to have and the person I used to be. This caused a lot of depression, anxiety, and disappointment for me.

It has also taught me a lot of life lessons. It’s ok if you don’t go through every stage of grief, or if you go through every stage a million times. There is no right or wrong way when it comes to dealing with the emotional side of living with a chronic illness. What I've found to help me is, to allow yourself to feel how you feel, but don’t dwell on that one feeling for weeks at a time. Gently push yourself through these stages.

It’s ok to be sad. It’s ok to grieve your old life or grieve the life you thought you once might have.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Julie Vallortigara Moderator & Contributor
Hi <inline-mention username="Ali Long" user-id="2106796"/> I can relate to that article a lot! In fact, I did some bereavement counselling when I lost my grandma who I was very close to. And during this therapy, I actually also talked about my diagnosis, the changes in my life and the losses I experienced as a result of living with AxSpa. I have to say that doing this work has helped me to sort out few things about my grief of my old life, some sadness and other hard feelings linked to my diagnosis. So yes grief was very present in my life and since I have worked on it, I feel much better and lighter about the whole thing I have to say. Take care, Julie.
margaretsherburne Member
Thank you for writing this article. I have never thought of the feeling I experience as grief. I could recognize myself in every stage. I miss not being able to travel and visit my family or even simple things like taking care of my home. There are days I can barely walk, and it's scary. However, I found acceptance is the key I have found the key to keeping happy. I didn't choose to get AS, but I do have a choice on how I deal with it. Knowing it's OK to experience these feelings helps too. I've been doing all the social media and design work for a church in my area for the last seven years. I've taken many online courses and even got a professional certificate in Designing with Photoshop. The work is so rewarding, and when I'm designing, I don't notice the pain. So maybe my body doesn't work, but my mind does, and I'm so grateful for my life.
Lucasrenzi Member
The grief was really hard for me to deal with. Every month there would be new information to grapple with and digest. The new information would always send me spiralling. Was my liver safe? Would this debilitating pain and short temper be forever? Would the medication work? Who was I as an athlete, father, husband if I couldn’t move? Why oh why do people keep asking me to be careful of my back problems when my muscles are fine, it’s only pain (this isn’t technically true but that’s how it felt)? I’m lucky, I was diagnosed within weeks and am in remission now 18 months later and symptom free but I will never forget.
Anna Samson Moderator & Contributor
Thank you for explaining all 7 stages! I've gone through this cycle so many times and it's hard every single time but it helps to know exactly what I'm going through.
Nicky Flikas Moderator
Hi <inline-mention username="Ali Long" user-id="2106796"/> , Hope your doing and feeling well. Thank you for writing this article it will help so many of us. This is also a great way to show a loved one what it is we are going through. I have definitely gone through all these stages. I love your message about how there is nothing wrong about grieving. It is so normal to go through this and give yourself all the time needed to go through not only that, but all the stages. Sending you hugs, Nicky (Team Member)
James Hollens Moderator & Contributor
Hi <inline-mention username="Ali Long" user-id="2106796"/> , I found this so fascinating to read as I have definitely experienced all of these stages myself. I found myself stuck on the shock and denial part for a long time when I was first diagnosed. I think I couldn't get my head around how someone in their early 20s could have an arthritic condition and after so many misdiagnosis beforehand I had had little faith in anything the doctors suggested me having. But since it became obvious that this was my situation and I learned to accept it I too have fluctuated through these stages at times in my journey. I really appreciate how open and honest you are about your feelings and showing us all that it is completely okay to feel these things. It is such an important message that there is nothing wrong with grieving and thank you for shining light on that! Thanks for a great read, James (Community Member)

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