Coping with Disability and Seeking a New 'Male Identity'
"What do you do for a living?"
That is a legitimate question for a 59-year-old man. It is also frequently the first question I am asked when I meet someone new. My answer is “nothing,” and it unintentionally stops the conversation cold. My follow up answer is, “I have rheumatoid arthritis (RA).” When I say that, I usually get a knowing nod and we move on to the next question from my new acquaintance.
It leaves me feeling awful, like I have broken an unwritten social contract. After all, when I grew up, men _worke_d. When a man said he didn't work, or that he was on disability, he was expected to say that he was, of course, planning on returning to work as soon as possible.
I do not plan to return to work. I have RA.
It was not always like this. In days past, I had a string of important, well-paying positions that gave me status and helped me tell the story of who I was and who I wanted to be. People asked my opinion. They asked me to speak at events. That all ended abruptly in 2008 when RA overtook my life.
At the time, my RA treatment plan was not effective. My joints were growing more painful as the stress of my job increased. Still, I could not face that word: disability. My employer was sympathetic, to a point, and wanted the best for me; but the business needed a productive employee. I was not doing the job, and that was frustrating for me and for my employer.
Disability changes everything
Looking back, I realize that concepts such as disability or sick leave were labels that, to me, implied weakness and failure. After all, not working meant not having a life. What would I do when people asked what I did for a living? How would I explain it to my grandchildren? How would I explain it to myself?
When RA took away my work life, I could not imagine what else I might do. I cried a thousand tears. I begged God to help me keep working. I stopped taking communion at church, as I had done every week for over 20 years. I felt separated from God and couldn’t understand why my prayers to allow me to work were not being answered.
I thought of suicide as a way to put an end to my suffering. I knew I was no longer a man—at least not a man as I defined one. Without work, I would be something else: something less than a man, and less than a human being. The thought sickened me.
At the urging of my wife, she and I looked squarely at the facts. It was clear I could no longer work at the level I needed to. So we (my wife and I) explored disability. When I met with my doctor he told me it was time and, in a way, that gave me permission to take the first step.
Adjusting to disability
Disability was something I resisted at every turn. I entered therapy to come to terms with my new reality. Telling my sons I could no longer work was gut-wrenching. I had raised them to believe that men always work. Both said they knew it was time, and each helped me see that a life without work might be possible. Still, no amount of encouragement from others could lift my spirits. I was sick, not just from RA and diabetes, but from my overwhelming sense of failure.
You might ask how I got over it—how I am alive now in 2016, and doing better. The truth is I never really got over it. I bristle when I pass my former employer’s office. I think, "Why am I not there working, doing my part?" Occasionally, I take on a volunteer assignment to do writing, but it only reminds me that I am no longer capable of producing at the level I once did.
I had to find other diversions. I went back to school, not because I thought I would ever use the education (I haven't), but to prove I could still accomplish something. I write for diabetes and RA publications, and I host my own website.
Still, today, eight years later, I want another crack at my boyhood dream. I want to go back and run the race. Despite everything I do, today I do not work and that faint voice in my head says that that reality will never be acceptable, no matter how hard I try to get over it.
Men work. So what am I? It’s an open question, especially when I'm asked what I do for a living.
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Rick Phillips was diagnosed with Rheumatoid Arthritis in 2000, Type 1 diabetes in 1974 and with Ankylosing Spondylitis in 2016. He also blogs at RADiabetes.com and hosts RABlog week each September.