I was diagnosed in seventh grade. I had no clue what fibromyalgia was, let alone how to spell it. It didn’t take me long to realize that it was something that I wouldn’t ever get used to. After time, however, I have learned that it’s something that I can live with.
I was diagnosed at Cincinnati Children’s Hospital by their rhuematology department after visiting multiple specialists in the Fort Wayne area. Since then, I have also been to Riley Children’s Hospital of Indianapolis and the Mayo Clinic in Jacksonville. Both confirming my fibromyalgia diagnosis and adding pieces to the puzzle explaining possible causes and conditions for my other symptoms.
How it affected me in my early teenage years is pretty much in line with how it’s affecting me in my twenties. Although, in middle and high school, I wasn’t worried about feeling well enough to go to work. Rather, I was concerned with feeling well enough to go to class, to social activities, or well enough to just get out of bed.
I would be lying if I said I never fear for my future living with fibromyalgia. I often wonder how I will manage the stress of child bearing and taking care of a home while working. Luckily, I am blessed with an amazing support system that I can rely on through any storm.
Friendships and fibromyalgia don’t mix all that well. If you suffer from any chronic illness I think you can relate. (If you can relate to that, lets chat!) When you’re not at school everyday you aren’t up to date with the latest gossip. Not attending the friday night football games means you won’t be in the student section when the pictures are being taken, and those memories that all of your friends have, you don’t. Instead, you have memories of the few games you could make it to and that week in the hospital that you wouldn’t wish on your worst enemy.
In the picture below, I was lucky enough to have my sister taking care of me before and after a procedure.
A while back, I came across a photo of a woman wearing a medical mask, the caption on the photo read “Do I look sick now?” Living with an invisible illness is debilitating. Not only from the physical pain, but equally due to the emotional pain.
Living with a chronic illness can make it hard for others to understand what you need. I know it has to be difficult for others, when it’s difficult to know what it is that I need myself. While on the outside I may seem put together, makeup done and smile on, on the inside my body screams to be put to bed.
According to the National Fibromyalgia Association, women are more likely to suffer from fibromyalgia than men. “The disorder affects an estimated 10 million people in the U.S. and an estimated 3-6% of the world population. While it is most prevalent in women —75-90% of the people who have FM are women —it also occurs in men and children.” They also state that it can be seen in families, implying that there may be a genetic component to the syndrome that is not yet confirmed.
I have some good days, and I have some bad days. The symptoms that come with this diagnosis change. What my biggest complaint was a year ago isn’t my biggest complaint today. Although my most common struggles are fatigue, nausea, headaches/migraines, difficulty swallowing, dizziness (associated with my iron deficiency anemia), disturbed sleep, confusion/forgetfulness, and pain. I have seen countless specialists including rheumatology, hematology, gastroenterology, neurology, and metabolic geneticists. I have been to physical therapy, occupational therapy, cognitive therapy and tried countless medications. Many of them (the therapies, medications, and physicians) have been a blessing with helping manage symptoms that come with this diagnosis.
The feelings that come with a diagnosis vary. For me, I face the feelings of seclusion, I’ve struggled with bouts of frustration when I feel as though I have no say in treatment, and the emotions of being sick and tired of being sick and tired. These feelings have lead to depression, anxiety, and a want for control. There have been moments where I have wished for something else to be wrong, something that had a simple cure. The truth is that fibromyalgia is my daily storm, and it is a storm without a cure.
It’s in those moments that I am reminded of a favorite verse, Jeremiah 29:11, “For I know the plans I have for you, declares the Lord, plans to prosper you not to harm you, plans to give you hope and a future.”
I have faith that my future, as well as the future of fellow sufferers, is bright. This Friday, May 12th, is Fibromyalgia Awareness Day. Awareness brings understanding and the goal of the National Fibromyalgia Association is to make an invisible illness visible.