Grief and Rheumatoid Arthritis
I grieve for myself. I should say, "my former self." I no longer grieve the event that caused the grief; that ship has sailed.
I grieve my suffering
Instead, I grieve my suffering. What I grieved for 12 years was losing myself when I was working, pushing, and maybe living.
I grieve for the person who wondered if he could still have self-respect as a man over 50, in the prime of his life, watching the world go by without him. I grieve for that man because I know the pain he felt.
My diagnosis story
The story is generic. I was accomplishing more and pushing harder than ever in my life when I noticed that pain was grinding away. A little at first, but it built almost to be intolerable.
I had two incidents involving my sons when I could not do activities that I should have done. So, I asked my endocrinologist about them. He "ran a few tests" and referred me to a rheumatologist who, on the spot, said I had rheumatoid arthritis. He questioned how I was still moving.
Later, he said that I had RA and AS, terms I knew little about in the beginning but conditions I would learn much about in the next 21 years.
I was determined that my life would not change
On that day, after I saw the rheumatologist, my wife Sheryl and I had a good cry in the car, and then I went back to work, determined that my life would not change.
That very day, I oversaw the award of 17 million dollars of contracts to build a new school. I was moving and the world was big. I saw no reason that RA would impact my work life.
Losing my job
Over time, the biologics worked and failed. My pain came and mostly stayed. My weight increased markedly, and I slowed down.
Eight years post-diagnosis, I was told that I was no longer up to the job. I knew it, but it broke my heart.
I knew that I had to seek disability. I was not okay with disability. So I cried a thousand tears a thousand times. Sheryl and I adjusted our living situation, reduced debt, and stopped buying things.
"Why are you here?"
I lapsed into a depression so great that I thought I would never escape. I joined and participated in a talk therapy group for one year.
I was no longer relevant. I no longer mattered. When I returned to my employer to clean out my office, people were friendly. But, the recurring question was, "Why are you here?" I was no longer accepted as part of their world. I was a has-been and, in many eyes, a never-was. I had lost everything.
Who was I now?
My identity was my job. Ask me who I was, and I would say my job title. Then I lost it, so who was I now? Nothing.
I grieve for that man. Because he endured such pain, I know he would wake up at night angry at those who said he could no longer do the job. I would cry for the life I lost.
I did have 2 lifelines. First, Sheryl still believed in me and she never saw me as a slacker. She always keeps me focused on health and being the best I can be. It is a tough job.
She must reaffirm me often, sometimes several times a day. But in those early days, her affirmation was required hourly. I was lost and starving for a lifeline.
The second was a scholarship to pursue a doctorate. I took the school up on the scholarship. I had no reason to believe I would ever use this education. It has never earned a dime for us, but for 5 years, it sustained me, feeding that need for positive affirmation.
I was an A-student in this final degree. I never missed a class, did all the assignments, and worked hard because I had nothing else. I wanted and got the affirmation I so desperately needed.
Getting unstuck took time
No matter how much affirmation I got, I still grieved. It took perhaps 10 years before I stopped thinking about it every day and another 2 before I stopped thinking of it at all.
Now, 12 years later, I do not grieve my job loss. I grieve for the man who endured that. I grieve for what it took to let it go. I grieve for all that time I was not able to move on. I grieve that man who felt he lost so much.
Grief is a process
What did all of that grieving for losing a job matter? Nothing. People say grief is a process; I believe that is true. I needed help to become unstuck in my grief process.
If you are stuck, perhaps you will look at my experience and think about how you can move beyond it? It is possible, and our community is here to help. Reach out for therapy, to our community, and for family support. You will not be sorry; I know that I am not.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?