Residence: Ventnor, New Jersey
Seth Coleman of New Jersey refers to fibromyalgia as a hidden monster. “I call it Leviathan; a monster outlined in the Bible, in Job, Chapter 41,” he wrote in an essay. “He is sneaky, invisible and ruthless, making it harder and harder to overcome.” But as revealed in the title of his essay. “Conquering Leviathan: Living with Fibromyalgia, A Man’s Perspective,” Seth isn’t one to give up. “Either we remain in the valley of defeat and live the rest of our lives as victims, or we dig deep within ourselves and find the joy of overcoming yet another of life’s challenges,” he says.
Q. What are some of the unique challenges facing men with fibromyalgia?
A. Mainly that it is perceived as a woman’s disease. A few of the doctors that I have gone to focused on women’s needs. I would sit in a waiting room full of women and be the only man. I would feel very out of place. Men are also taught to pull themselves up by the bootstraps. There’s a certain sense of being a man and having to be in charge. And all of a sudden, you are no longer in charge; something else is in charge of you.
Q. What has helped you to counter these challenges?
A. Faith, coupled with the fact that I had to get to a point where I accepted the fact that I had the disease and it was not going to go away. Once I did that, I started learning how to live with it and to combat it.
Q. What treatment options have helped you manage your symptoms?
A: Going to a holistic doctor has probably been one of the most important things I’ve done. Holistic doctors concentrate on helping the body to help itself through nutrition and things like diet, detoxifying and foot baths. I also try to get a lot of rest. I limit the amount of time that I go out to about three hours a day. Before I go to a function, I try to get as much rest as I can.
Q. People with fibromyalgia often feel isolated. What do you do to reduce your sense of isolation?
A. I go to church. In fact, I’m not Jewish, but I go to a Jewish service as well. Those are things I can do within a few hour span and then go home to rest. It is hard for me to go out for long periods of time. I also spend time on the Internet researching all of my diseases. My new job is learning to make myself the healthiest I can be.
Q. When did you start writing?
A. In the late ‘80s, I took a year off from corporate work and wrote a book. However, my funds were running low and I was going through a divorce and needed a steady income, so my writing career ended up on the back burner. Last Christmas, I volunteered to write an article to submit to the NFA’s magazine. That had been the first time I had picked up a pen to write in a long time.
Q. How has writing helped you in your fibromyalgia journey?
A. When I wrote the two articles I submitted to Fibromyalgia AWARE, it actually helped to settle something deep within me. I was able to review my life with the disease and see how far I had come. Writing it all out helped me understand that I had made strides during a time I had thought myself a failure and that my life, for all intents and purposes, was over. I could read my own words and understand that somehow a transition had taken place in my soul. I admit, for a while, fibromyalgia had conquered me. But at some point I had made the decision to not allow it to be my boss. I started to take control of it until I got my life back. Funny how those articles worked out. I tried to write articles that would encourage others and what really happened is that I ended up encouraging myself.
Q. Your positive disposition really comes out in your writing. Have you always been such a positive person?
A. No. I was raised very much a worrier and I worried about everything. And again, I think my faith helped me overcome worry. I also realized that there’s no one else that’s going to look after me, except me. I had to be my own patient advocate. And, there’s no use in being negative.
Q. After a 2 1/2-year process, you were approved for disability in April. What is your advice to those who are in the process of applying for disability?
A. I knew that the judge’s knowledge about my case would be important and I did not want to rely upon the information in the Social Security records. I had previously gotten a copy of their files, which are available to anyone who asks, and they had not been updated and were missing important records that should have been available for the judge to review before my hearing. Therefore, I took it upon myself to make sure the judge had all of the information he needed to make his decision. The most important thing was that a few weeks prior to the hearing I asked both my specialist and my primary care physician to write a letter recommending it. They both did and I was able to take those letters with me, along with a concise list of all of my diseases. The judge commented that he was glad to get those letters and the information I provided, as he did have some questions that the Social Security files had not answered. My advice is to be prepared and don’t leave anything to chance.
Q. Do you have any advice for others who suffer from fibromyalgia, particularly men?
A. Don’t give up; it’s not all in your head. It’s a real problem and we can’t perceive ourselves the way we used to. Normally a man perceives himself by looking at himself through other people’s eyes. We have to stop doing that because no one can see on the outside what we’re feeling on the inside. If we do not perceive ourselves on what other people expect us to be, we get a more realistic view of who we are and what we can do.
Click here to read Seth's essay, "Conquering Leviathan."