Chronic illness,  Costochondritis,  Fibromyalgia,  Lifestyle

Chronic Illness & The Grieving Process

Coming to terms with a diagnosis of a long term condition can be difficult. Our bodies and minds are attempting to adjust to the new situation we find ourselves in. We feel a loss for our lives prior to illness. In a way we might approach the loss like we would if we were grieving the loss of a loved one or relationship. Speaking from my own personal experience with fibromyalgia I went through and continue to go through the various stages of grief.

The concept of grieving for your life before illness has been written about multiple times. Lisa Sniderman touches on it in her book A Light In the Darkness, as well as other chronic illness writers and bloggers. I recently read an article by Angie Ebbe – Grieving My Old Life After A Chronic Illness Diagnosis published on Angie wrote about the time she was sitting on her floor going through her much loved high heels. She was no longer able to wear them due to her condition. This reminded me of several times where I found myself in similar situations. It is this reason that I wanted to share my ongoing grieving process.

How can it only be ten years when it….

Feels like a lifetime ago. Before my symptoms started I was an average 30- year-old woman. working in a job that I liked, I had a social life. The possibilities of what I could do with my life was infinite and then it happened. I began to experience more and more symptoms that robbed me of my job, my social life and for a while my dreams.

Grieving doesn’t go in a straight line

If you’ve had the misfortune to experience grief first hand you will know that the process of grieving differs from person to person. One may start with anger, whereas another may start with denial or depression. They may also find that they experience some of the stages then go back to a stage they’d already experienced.

A circular diagram with arrows pointing showing the stages of the grieving process  From the top left the words denial, ager, bargaining, depression, acceptance in a clockwise direction.

Grieving for life before chronic illness, feels like you’re stuck on a carousel that won’t stop. Whenever a new symptom starts or you experience a particularly difficult flare, you take one or several steps back. Only to feel like you might be coming to the end of the process and properly accepting your diagnosis for the grieving to start over again.

Grief is like the ocean. It comes in waves, ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All you can do is learn to swim.

Vicki Harrison

Me and my grief

Due the fact that my diagnosis took several years of doctors appointments and referrals. When it was confirmed that I did indeed have fibromyalgia. I immediately accepted the diagnosis! It didn’t occur to me at the time to feel angry or depressed. Would I say that I was happy about being told I have a life long incurable condition? No, but I was glad that someone was listening to me and believed me when I told them about my symptoms.

It took some time, I couldn’t say how much time had passed before I began to experience the other stages of grief. When the anger towards my diagnosis appeared it was like a tsunami. I was angry at everything and everyone. The doctors for not believing me, the universe for thrusting this incurable condition on me. I questioned myself as a person. Was a bad person, did I do something to deserve this? After some time I realised that I wasn’t a bad person and that I hadn’t done anything to deserve fibromyalgia it was just a case of very bad luck that I will have to live with.

I was no stranger to depression, before my diagnosis I was on medication for depression. Once my acceptance of my diagnosis wore off my depression took a nose dive, It felt like my life was over, that I would be better dead. Getting out of bed was difficult. I shut myself away from the world and the people who loved and cared for me.

Denial isn’t just a river in Egypt

Denial and bargaining are hard feelings to process when your body doesn’t let you forget that you are in never-ending pain. However they do happen, your mind is telling to push yourself, don’t listen to your aching body. The pain is only temporary. If you do this you will feel better!!   Our mind lies to us, making us push ourselves more than we should, resulting in even more pain and fatigue. The reality is that fibromyalgia doesn’t have a cure and I need to find a way to live my life with the illness as best as I can and to the fullest as I can.

With the right support group, a positive mindset and time, I hope that the feeling of loss for the old me will be easier to deal with. The ride has been long, bumpy & I expect that there may be some more setbacks, but as Dory says “just keep swimming, Just keep swimming”. We can get through this together!!

Have you grieved for your life before chronic illness? How did you learn to deal with the loss of your old life? Let me know in the coments.


  • Becky

    Thank you for writing this. I can relate to it so much! Although I am not parenting small children any longer (mine are grown and married)… I am still struggling. I am 54 yrs old and was diagnosed with Hashimoto’s Thyroiditis 3 years ago. I grieve my life before Hashi’s almost every day and I am still learning how to cope. I look forward to reading more of your posts. – Becky

    • Nicola J Ogston

      Thank you for reading and taking the time to comment. I’m sorry to read about your diagnosis and grieving for your life before. I truly believe that if we have the right support system around us it can get a little easier. The grieving might never go away, but it might not be as tough to cope with.

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