Sunday, May 12th marks the beginning of Fibromyalgia Awareness Week. Coincidentally, May is also Mental Health Awareness Month. So, for now, Fibro and Mental Health have a bright spotlight placed upon them. This is great, bringing attention to a disease that ravages the life of 6-12 million Americans alone, adding many of us to the 44 million Americans who suffer mental health conditions. I wish, however, that this spotlight shone the rest of the year and that sufferers, providers and those that they love had better insight into how these two life altering illnesses directly coincide with one another. And a bright, halogen, flashing, disco spotlight should be shone, because Fibro sufferers commit suicide at a rate of ten times that of the general population.
So why does a disease, now proven to *not* be strictly a mental health condition, so dramatically affect the mental lives of Fibro sufferers? Here’s my take:
- There’s no cure. So that’s it. An acme iron is dropped on the heads of sufferers once a diagnosis is finally made and that’s it. No cure, no hope. It paints a pretty bleak life picture for those afflicted.
- Lack of disease specific medication and/or treatment. As of this moment, there are no FDA approved drugs specifically created for the treatment of Fibro. That often leaves us relying on anti-depressants, anti-malarials, anti-epileptics and anti-anxiety medications. As for treatment; the same disastrous cornucopia of non specific alternative treatments apply: Accupuncture, Yoga, Therapy, Reiki and Meditation.
- Loss of life. Most people I know with Fibro, including myself, report a widespread loss of life. Employment, family, friends, financials and hobbies all typically fall by the wayside as sufferers contend with widespread, multi system, unpredictable symptoms that make their old lives difficult or impossible to sustain.
- Financial burden. I wish now, 8 years later, I had kept a running tally of the overall cost of being sick. Between the loss of income, doctor visits, medications and alternative therapies, it’s well over 6 figures for me and not improving any time soon.
- Social isolation. Many of us can no longer work. Some of us have difficulty driving. Most all of us have difficulty being “dependable”; all for reasons completely out of our control. As work and friends begin to dwindle and sufferers become more reliant on being home, social isolation and loneliness sets in.
- Social stigma. Fibro is one of the very few, if not only, illnesses that is often not believed. It’s sufferers are labeled fakers, drama queens or people just interested in “living off the system”…..I struggle to understand ANY of this line of thinking. WHY on earth would we fake???
- Wide range of systemic symptoms. Most patients suffer from a wide range of symptoms, such as: pain, fatigue, nausea, dizziness, vertigo, migraines, fainting, clumsiness, brain fog, temperature sensitivity and difficulty speaking (shall I go on??). The wide breadth of symptoms, affecting various parts or processes of the body, make it even that much more difficult to control.
- Unpredictability of symptoms. Just yesterday, I got all excited and dressed for my BIG outing to Lowes. I was all excited to finally get out of the house. Ten minutes into the drive, we had to turn around so I could go home to bed. I was fine one second and desperately in need of getting to my bed the next. It makes even a trip to Lowe’s impossible.
- Vulnerability of patient. I have always been an independent and headstrong woman. Well, until now. The unpredictable symptoms and often severe, widespread issues, render even the most bull headed of us vulnerable. Trying to carry on as before just isn’t possible. Things as simple as getting groceries or running to the mall often become huge hurdles and make us wary of ever trying to do these things on our own. That dependency on others can be quite terrifying for those of us used to being self sufficient.
- Lack of specifically trained medical professionals. We often get kicked around from provider to provider, chasing a myriad of symptoms, across multiple health disciplines. While Rheumatologists often end up treating patients, I now rely on my Primary Care Physician for most of my treatment.
- Lack of professionals understanding the correlation of wide ranging symptoms. I can’t tell you how often I see a Doctor and have to deliberately ask how this current health challenge is affected by my Fibro, or if it will trigger my Fibro or that specific symptoms are interconnected. It’s often me explaining the disease and it’s widespread effects.
- Lack of support. Often, we lose family, friends and coworkers. It’s tremendously difficult for us to keep up with people who have no limitations. Likewise, those without limitation often find it difficult to understand constant cancellations or modifications that need to be made.
I am not necessarily sure that I have articulated ALL of the issues comprised from having Fibro. What I am hoping, is that I have well highlighted a few that contribute to, or cause, the anxiety and depression that also accompanies Fibro. For most of us, our lives have quite literally been turned upside down. It can be a very lonely life to try picking up those pieces alone. This isn’t a one month of the year issue. Mental health and Fibro are a 365 day triathalon of pain, suffering and illness. So as our lights shine on it, this month, please remember that next month we will still continue to suffer. Be kind to yourself if you’re sick; be compassionate and understanding. If you are not sick, please remember: we didn’t choose this and we are doing our best.
As always, I will be pulling for you ❤ Stace