alt=a woman in a hijab with chronic illness, going through the stages of grief

Chronic Illness Grief

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.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

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.

Join the conversation

or create an account to comment.
poll graphic

Community Poll

Have you entered our awareness month giveaway yet?