Sure we can talk anytime! Persistent migrain auras that last beyond the migraine are rare so hard to find people to talk to about it for sure. I also get a lot of varied auras that fluctuate a great deal.
Fibromyalgia is a chronic syndrome defined by widespread muscle pain, fatigue, sleep dysfunction and cognitive dysfunction.
September 8th to 14th is Invisible Illness Awareness Week. Almost 1 in 2 people in America has a chronic illness. Almost 96% of people who have an illness have an illness that is invisible such as chronic pain. For more statistics see Here.
For this invisible illness week awareness I would like to discuss impact. For me that is what I most consider when I think about my invisible illnesses. For example I have asthma and hypothyroidism which are both invisible illnesses but for me they are very well managed. I discuss them for time to time and they do have some impact when you look at the whole health picture but overall I cope with them very well because they are managed. On the other hand, I have chronic pain conditions of fibromyalgia, chronic migraines and peripheral neuropathy and add those together and the impact on my life is significant.
Some of our invisible illnesses can have a significant impact on our lives. And, by the way, no rule that specifies we can just have one health condition. Rather think that is uncalled for though. One should be the rule and then you are good for life. Should be in the rule book.
The impact on our lives can be seen in all facets of our life. Our divorce rate is 75% and we know the extra struggles and issues we have to overcome there. We have a higher risk of depression and suicide. Often you see stats on the cost to a country but the fact is there is a cost to Us. Education is affected as well as careers. Our income levels are affected as a result. I fought very hard to keep a career but in the end I have been on a long term leave for two years because I was not able to function working full time. We have a risk of becoming isolated. I call this the Hermit factor. It happened to me. It is a slow process that happens when we are in too much pain or too fatigued to go out, so we decline invitations, until slowly the invitations stop coming. Friends drift away and you do not have the energy to try and stop this from happening. Until you are a hermit……
Beth Darnall, PhD, a clinical associate professor at Stanford’s Pain Management Center, said in her study “A key message that I bring forward to the table is that pain isn’t something that just happens to us. Once we acquire chronic pain we are constantly participating with our pain in terms of our thoughts, our beliefs, our emotions, and our choices. If we can focus on that and optimize our control there, then we can set ourselves up to have the best response to all of the treatments that our doctors are going to be trying for us.”