Day 2 RDBlog week – I quit
Welcome to day two of RDBlog week the annual time when those of us who blog in the Rheumatic Diseases space blog about our condition. Today’s prompt is
Adjust – How do you adjust to the effects of RD on your career, dreams, goals?
I did not adjust very well. At first, I tried to bluff my way through. I was working hard and failing. I was failing at home, work, school; in fact, I was an overall failure. I could not maintain my responsibilities and my health. Rheumatoid Arthritis had attacked my body, and I was losing. When it was pointed out to me that I was failing at work, I knew the time had come for me to change. So I embarked on a six-month effort to assess what I was going to do. My natural tendency was to stay at work, pour more in, and hope for better results.
Stepping in
The trouble is I did not have the energy to pour into work. Thankfully Sheryl stepped in and said you need to change your work situation. But who would hire a 50-year-old man with two chronic diseases, who was performing poorly at his present job; no one I knew? In effect, RA had me boxed in.
That is when we decided to pursue medical disability. Doing that was a blow to everything I am and was. (I will explain the am and was in a second). Work was my entire public identity. Without work, what would I be? It was clear that I was going to lose my job one way or another. I was either going to be invited to depart, or I was going to figure out a way to cope even if only on my terms.
Feeling lost
I chose to leave on my terms. The minute I no longer worked; I was lost. I had to do something to have meaning in the world. Frankly, I had nothing. So I tried some things. I continued in school eventually earning a doctorate in Education. I joined a local United Way allocations subcommittee. I was not very good at that, so after two years, I resigned. I joined a local charter school board that I remained on for six years eventually serving as president. I took up some offices at our church where I served for four years. I eventually became bored and resigned those offices. In each case I was groping for something that gave me meaning. Anything that would make sense and allow me to contribute. I would not say I was a failure at any of these things, but I was not the best. Something I had to admit when I chose to move on from each.
In the meantime, because I was not working, I got healthier. It was an inch by inch improvement of my life. In the end, I started my little web site connected to people in the RA and Diabetes communities. I serve on an FDA panel; a national arthritis panel and I am a local leader for an arthritis support group. Hopefully my writing is occasionally good enough for it to get published in the diabetes and arthritis communities. But I also have to understand that much of this volunteerism is for show so sometimes I feel like I am asked to be a rubber stamp for decisions already made.
Also, in some cases, I have said no. No to a request, no to an opportunity or no to additional service. I had a difficult time saying no when I was assigned work while still working. As RA continued to take a toll, I would often say give me more. Dig in, go deeper.
It still hurts
This brings me back to the earlier statement that seeking a medical disability was and is a blow to everything I am and was. You see in my family we do not lose jobs. Well, I lost a job. So I guess I was first and that hurts as well.
Even today 11 years later I still want to work. I want to make decisions and pursue goals. I do not want to be irrelevant. I know I will never be able to be paid for my work again. I know if I did, I would wreck my body.
Yes, I hate being classified as disabled and looking back on the mess of leaving work I have to say that maybe quiting is the most significant change in my life since being diagnosed with RA.
-30-
A heartfelt and honest description of how many of us feel. When we “gain” the RD diagnoses, we “lose” our identities. What’s my purpose?, work to pay the pharmaceutical companies, the multidisciplinary team to help me cope? It really takes years to find a new meaning to our lives.
Thank you Christina. I know the struggle you speak of. Oh it is so difficult. I also know you have way more purpose than the bills. I bet if people who know you were asked, they could cite dozens of reasons you are essential to their lives.
You will never, ever be irrelevant. You inspire me all the time….and many others in the patient community. Thank you for sharing!
Thank you for the kind words Kelly. I however got pretty off track for a few years at the end of my career. Like most of us, someday I hope to be totally on track.
Oh, who am I kidding, I love being slightly off track. Just not so much off track. 🙂
Great post. I think what is interesting is the concept that we are only validated through our work and what we ‘do’, rather than who we are? And there is probably more pressure on men.
Emma, I do as well. I think in the US most of us are defined mostly by our work. What a terrible way to validate a human. But as you say it is especially tough for men. We tend to be work focused.
Thanks for sharing your story Rick….I’ve worked at many volunteer jobs since my retirement and I’ve enjoyed the time I spent in each endeavor. But I, too, miss work. I knew I had to leave also to improve my health. I’ve had ups and downs but am so grateful for all the open doors and support.
I am as well Anne. If not for the love of Sheryl, I have no idea where I might be. I am sure Steve has a great deal to do with your happiness as well. We have many blessings between us.
Great post, very useful information, thanks for sharing with us.