For as long back as I can remember, I had one health problem after another. It is hard for me to imagine myself in good health. When I was six, I had my first migraine that resulted in a stroke. I have a small whole in my brain to prove it. Later, I had chronic strep throat that kept coming back for nearly a year. Eventually, I had to remove my tonsils because they literally resembled cheese. I could list on and on, but what is the point? The fact is, I have been sick most of my life, but that’s alright.
Last fall, after having body pain as well as many other symptoms for two years, I finally decided to take my health into my own hands and get a diagnosis. I had no clue what I had. For nearly two years, I had been going to a chiropractor regularly and was often taking five ibuprofens a day. Nothing helped. With each month, my pain worsened. I began searching for answers from many specialists. Some of them said I had rheumatoid arthritis, and others acted as if I was simply over exaggerating my pain. In a matter of three months, I had countless blood tests, a CAT scan and two MRIs. With every test, they found nothing.
One of the worst things, I believe, is feeling excruciating pain at the same time as being surrounded by people who aren’t able to believe you. It’s hard to blame their ignorance. Invisible illnesses are just what their name implies, unseen. That’s what makes it so hard. I always doubted how much I was in pain. My health was minimized, and my trust in my body stretched thin as I searched for what was wrong with me. I came to a point where I couldn’t trust what I was feeling.
It is a strange thing to finally hear a diagnosis. After starting the long search for an answer in January 2016, we heard at last from a rheumatologist. I was diagnosed with two illness, EDS-Hypermobility being genetic and Fibromyalgia simply being chronic. Relief overwhelmed me, not knowing people would believe me. Relief confirmed I wasn’t crazy, that this pain was real. Then a wave of depression flooded over me as the doctor explained there was no cure. I don’t know exactly what I had expected. Perhaps, in the back of my head, I hoped I’d find out what I had and they’d give me some antibiotic. I’d be fixed, and I’d be back to normal. Life isn’t so simple.
Fibromyalgia is often characterized as an elderly disease. When I started telling people I had Fibromyalgia, they often thought of the commercials with older couples in them. Fibromyalgia is an illness that affects the nerves and soft tissues. It’s also somewhat like an umbrella term with many symptoms beneath it. It certainly is not just an elderly disease, anyone can have it. With Fibromyalgia, I experience Fibro-fog (confusion), migraines, chronic fatigue, chronic pain, stomach pain, dizziness, and several other symptoms that vary depending on weather and time.
EDS-Hypermobility basically means I’m hyper flexible. My tissues, tendons, and even ligaments are elastic. Because of this, my joints often slide around and come out of place. It causes a lot of discomforts. I’m rarely able to sit still or hold the same position.
It was difficult to hear that I had these chronic illnesses. I thought my life would improve after learning what I had, but in many ways, it only worsened. Quickly, I became depressed as I realized my life would not be as good as it once had been. I came to know the challenges of missing school and living to the will of my body. It was a wake-up call. The future I hoped suddenly wasn’t so certain. I was regularly missing two days of school a week. If I was struggling this much in high school, what did that mean for a career? Not only that, but EDS-Hypermobility raised questions about whether having children was possible. My entire future disappeared behind the veil of uncertainty.
Nearly a year has passed since I was diagnosed, and I can tell you it gets easier. The pain has not ceased, and I still struggle through the day. The only difference is, I do not let the worry of a future stop me. I know very well that the years ahead are up in the air, but I refuse to give up my dreams. No matter how hard it gets, I will fight each day for my education, my career, and the life I’ve dreamt of since I was little. These illnesses will not slow me down -- in fact, they will make me more compassionate and loving than I ever could have been without them.
If you are going through the long process of trying to get a diagnosis, know that you are strong and can make it past this time of not knowing. Instead, try to know that these hard times don’t determine your life or your future. Try to know that your struggles are valid, but you are also not defined by them.
