The grieving process for living with a chronic illness is much like the loss of a loved one. At times, we face changes so drastic, we loose our identity.
One of the most challenging parts of this process is that it is ongoing. We work toward an acceptance of a loss, then 1) suffer more losses/limitations; 2) are forced to change or leave careers we’ve worked toward; 3) require the use of adaptive equipment, requiring adjustments and adding additional labels; etc.
Changes like these can cause us to backtrack our grief, feeling as though we’re starting over.
Grieving is something that cannot be rushed. People living with chronic illnesses need to work through the process at their own pace. We also need reassurance from medical-care providers, family and friends that this is normal and that it’s OK to seek professional help.
It took almost 14 years for me to recognize the grieving process. I was completely unaware of this stage with my illness. From 1996 to 1999, I had six major joints replaced and a few reconstructed. The ups and downs were so quick and sudden I never had time to realize all of the changes happening to me. Going into the operating room during that time span was like “Norm” walking into Cheers. The surgical staff would see me and yell, “Annette.”
After each operation, I was made aware of my newest limitation, but never truly digested how the changes were going to impact the rest of my life.
When I took a break from surgery in late 1999, I began to feel good. Most of the severe pain had been eliminated by the joint replacements and for the first time in years, all of my limbs were moveable.
My first challenge was to get the limbs to move together. Then I had to work in the limitations; can’t reach, can’t lift, can’t get down on the ground … That’s when it hit me and I asked the question, “Where’s Annette?”
As I evaluated the “Annette” I always knew, I began to realize, she didn’t exist any longer. Annette was always described as being physically strong, independent, daring and a tough girl. This person who I saw in the mirror had no physical strength, was somewhat dependent, quite a bit smarter and caring and sensitive.
It was a bitter/sweet time for me. While I mourned the loss of the Annette I knew for so many years, I celebrated the birth of “The Tinmom.” The old Annette was gone and she was never coming back. And yes, I do miss her! But the truth is, I love the person who I’ve become. I love being The Tinmom!
Below are the steps of processing grief (which I will address in my next blog):
• Denial/Isolation
• Anger
• Bargaining
• Depression (this one is recurring and will be address in a future blog)
• Acceptance/Adjustment
These are the natural experiences of a loss and they are normal. All of us living with a chronic illness must be able to rebuild our lives so it has meaning and purpose.
I will address the process in my next blog. In the meantime, if you have experienced any part of the grieving process (regardless of the circumstances), please share. You could help someone or perhaps we can help you.
Remember, you are not alone!
I am having a very difficult time dealing with all of this but I am glad to know I am not alone.
Your blog is quite timely as just this morning I said to my husband...I miss the old me. Am looking forward to the future blogs to help me through the grieving process.
I'm fairly new to this site and love it! Am reading backwards through the blogs and comments as I have time and find them extremely helpful and comforting.
My arthritis is mild compared to many and I read this as I have a friend with severe disease. But I do have a disability - Meniere's Disease - which has devastated my life.
I'm also a psychotherapist and have worked with many, many people who are quietly and tragically suffering huge losses to their sense of self as the result of disease or illness. Many have complex PTSD (post traumatic stress disorder), depression and other mental health problems created purely by being so ill. Believe me, those of you who are struggling are far, far from alone...
Elisabeth
You have to do for yourself, its like any sort of recovery. YOU have to want to get better, no one can do it for you. You are limiting yourself, family and freinds are there to support, care and be your cheering section. Not to be your servants.
Its a long hard road but worth the effort to feel better - a little day by day.
It feels good to know I'm not alone.
I've had RA for almost 6 years now, and still it is emotionally difficult to deal with it at times.
Leave a Comment