A Young Person's Perspective on Fibromyalgia
Life as a 23-year-old woman with fibromyalgia has presented many unique challenges. I had to deal with brain fog during the SATs, an unfortunate prescription drug interaction with alcohol at a frat party, and unexpected weight gain during prime dating season.
I’ve also coped with many of the same experiences as my more “typical” fibro counterparts: an abrasive doctor who told me (for five years) that fibromyalgia was a fake diagnosis delivered to whiny old women to shut them up; an unfeeling therapist who told me I was lazy and manufacturing my symptoms to get attention; and the oblivious elderly patrons of the warm water pool where I do physical therapy asking me what sport I was playing when I was injured. Yes, I’ve suffered disbelieving friends, family, strangers, and doctors, invalidating insults from clueless sympathizers with only the best intentions, and the frustration of having to explain for the millionth time what fibromyalgia is and that I’m not making it up.
I lead a life very different from the rest of my fun-loving, carefree generation, and I’m often amazed by the things they take for granted. Many young adults buy fancy cars; I bought a fancy mattress. When my amazingly supportive husband and I looked into buying our first house, our primary concern was limiting the number of stairs I’d have to climb because the bursitis in my hip often keeps me from walking. I usually don’t go to parties because I know I’ll be too tired to stay long, and I have to choose restaurants carefully to cater to my IBS. Even on our honeymoon we had to plan activities around my napping schedule… and I packed a heating pad, not sexy lingerie.
I’ve been most frightened by the threat to my lifelong dreams and aspirations. I realized after a month of trying that I would never be well enough to have a veterinary career. I quit playing tennis and had to limit my forays into pottery. The promising future I’d expected to have as a child has been stolen from me, or at least made a thousand times more difficult. I suppose fibromyalgia has helped me sort out my priorities and appreciate what I have: everything I accomplish is a result of persistence and desire. I take nothing for granted.
My wizened outlook on life is a result of a year of forced “vacation.” A year ago I became too sick to continue with normal life, and had to quit graduate school, move across the country to live in my parents’ basement, and completely reevaluate my life. After years of preparation, I was standing at the starting line of my real life and unable to take a step forward. I felt like a washed up has-been, except I was so young I was a never-been.
I was often told invalidating things like, “It could be worse,” or “I guess you’ll just have to learn to live with it,” or, my personal favorite, “You’re just not motivated.” Ambition and intelligence are not my problems. The myriad symptoms of this complex, completely misunderstood set of illnesses (and some very poor medication choices made by clueless doctors) are my problems. Dismissive statements don’t take us seriously: chronically ill people don’t have the energy for anything but utter honesty. When I explain fibromyalgia, I want someone to say, “That really sucks, and I am so glad that I don’t have that!” That would be validating.
But a year, many days of sleeping, lots of Aleve, two good doctors, the proper medication, and several hundred dollars of physical therapy later, I’m back on track and have some hope for my life ahead. It won’t ever be a normal life, but I try to convince myself that it will be richer because of the trials I’ve faced and the lessons I’ve learned. However, I need what every fibromyalgia sufferer needs: understanding, compassion, a wonderful doctor, a strong support group, tenacity, and a heavy dose of good luck. And as a young person with fibromyalgia, I need a relaxing party that ends early and features bland cuisine.