Grief, Arthritis, and Applying for Disability
I grieve for myself. I should say my former self. I no longer grieve the event that caused the grief (that ship has sailed). Instead, I grieve my suffering. What I grieved for 12 years was losing myself when I was working, pushing, and maybe living. That was before a forced retirement due to the ill effects of rheumatoid arthritis (RA) and ankylosing spondylitis (AS) when I had to fill out paperwork to claim a disability, fight the local Social Security office for disability, and face my self-doubts. 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.
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 arthritis. He questioned how I was still moving. Later he said 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.
On that day, after I saw the rheumatologist, 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 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 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 OK with disability. So I cried a thousand tears a thousand times. Sheryl and I adjusted our living situation, reduced debt, and stopped buying things. 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 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.
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 two 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 five 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.
No matter how much affirmation I got, I still grieved. It took perhaps ten years before I stopped thinking about it every day. Another two before I stopped thinking of it at all. Now twelve 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.
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 and 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.
How much about your AS do you share with others?