I have posted about this subject before; a few months back. We all know that receiving disability for this “invisible” syndrome is not easy. Many of us survivors have to work. Having stated these facts, I have a few issues with some of the issues that are discussed as though we all have these issues. I do understand that this is a broad accommodations sheet for both employees and employers created to address all possible symptoms that present with our syndrome.
First I am going to discuss my favorite topic, depression. Everytime I read that depression or anxiety generally go hand in hand with chronic pain, I get angry! Yes, I was depressed during my first couple of years. It was a new, constant pain of a monkey wrench that stopped my entire life. I had no idea what was wrong with me for two years. I sobbed and lashed out daily. Afterall, I had just experienced a trauma; I lost my old way of life and had no control whatsoever over this loss. It is like experiencing a death.
That was 16 years ago. I am a type A personality and did not accept this diagnosis, or the chronic pain, without a fight. There was exactly one book available on this topic back then. I think there were three or four online forums, none of which were great as the moderators did not step in and stop others from snarky comments. Despite this I pressed forward. I made it my chore to work through the book and figure out how to live Well despite my condition. My depression lifted as I actively worked on how and what I could do about this syndrome.
I have depressed, or sad days. In this post, I am only discussing my Fibromyalgia, not any other recent problems as that would only confuse this thread of discussion. I get angry about chronic pain from my Fibromyalgia sometimes, but not often (again without discussing the last few years). I never experienced anxiety about chronic pain. I have numerous other issues that create anxiety, but pain was never anxiety filled for me. This does not mean that other Peers do not have depression or anxiety.
Chronic pain is like a balloon collapsing in on itself, popping and shrinking the air out of it. Fibromyalgia can feel like this. The life we had before has shrunk, our air has been sucked out. Newly diagnosed, or persons experiencing this constant pain sucking all of air out of our life can feel this as fear and grief. The question I always raise is this; in any persons life, a traumatic event creates a cycle of grief, but most get out of this loop at some point, so why does Fibromyalgia automatically come with the tags of depression and anxiety? Being a old-school daily pain survivor, I have been on forums galore, read too many research articles and books on this topic, and frankly most persons who are beyond the one or two year mark of experiencing this new way of living are not depressed or filled with anxiety.
There are many other symptoms listed within this accommodation for workers and their employers. I do not have issues with the rest of them, many of us do have irritable bowel syndrome, are sensitive to loud noises or bright lights. Ergonomic work stations are absolutely necessary for everyone! Fibromyalgia causes me to get migraine like headaches. And more.
I love that by law employers should give us more breaks, time off for counseling appointments and allow us to work from home. How wonderful that would be for anyone. Another item that is listed actually makes me laugh; the employer should write out our specific tasks for our job in easy to understand language; Ha! Being a student for ten years to obtain my Masters degree included internships that were very complex and demanding. I also worked as an Independent Living Specialist at a Center for Independent Living and as the assistant to the Head of the Disabled Youth department at the same agency. We, and the majority of the staff, were/are disabled in some physical manner. None of these items were offered there except for the ergonomic work stations and the understanding that the disabled were capable of being just as productive in their work careers as any other person.
Read the link over and if I may suggest this, print it out and put it in your binder or daily reminder book. I will add the same point I made in the previous post about work. Be aware of where you work and who your supervisor is before going into a meeting and asking for the few, most reasonable accommodations you think you will be able to receive, without getting replaced. Despite the law agencies will find a way to push you out. I have seen this many times. So, please just be careful if you need to work.
I am posting a poll about this topic, please respond and forward to all.
Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Couch