What I want you to know about living with fibromyalgia

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest post is by Emily McCallister

My name is Emily McCallister. I am 24 years old. I have lived with fibromyalgia for 10 years.

According to mayoclinic.com, fibromyalgia "is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory, and mood issues." The way I explain it when I'm in a good mood is that it feels like arthritis in my musicales. The way I explain it when I'm in a bad mood is that it feels like someone beat me with a club in my sleep.

Imagine, if you would, being 24 years old and feeling like you're 75. At 24, women are typically climbing the ladder in their chosen career, going on dates, attending happy hours with friends and colleagues, and traveling. Me? I'm lucky if I can pull myself out of bed in the morning. I wake up, and I immediately feel the sensation of exhaustion. Basically, I never (never ever ever) feel rested. Once I muster up the mental agility to convince myself to get out of bed and get ready for work, I slowly become aware of all the aches and pains. By the time I'm dressed and driving to work, I feel like I need a nap. Then, I sit in front of a computer all day where I become increasingly more aware of my aches and pains. By the time I get home at night, I can't muster the energy to meet friends for dinner or drinks. I'm having a good day if I take the time to cook dinner. I'm more likely to have a bowl of cereal. I usually lay down around 7:30 because I have no more energy. I fall asleep around 10, wake up at 6:30, and start all over again.

Can you fathom how depressing it all is? To feel sick 24/7? I carry the majority of my pain in my hips. It hurts to sit for extended ( less than 2 hours) periods of time. I prefer to be standing or laying. I endeavor to not let my condition impact my friendships or fun, but it of course does. I cry more than seems normal because I just want to be painfree.

The diagnosis of fibromyalgia comes through the non-diagnosis of other chronic illnesses (lupus, rheumatoid arthritis, Lyme disease, etc). Because there is no one test that conclusively proves fibromyalgia, there are many doctors who don't believe it is a real condition. They believe patients are fabricating the pain in search of validation and pain meds. Therefore, not only do I feel like an outsider because I can't participate in all I want to, I also feel like an outsider in the medical community. It takes more time than it ever should to find a doctor who not only believes the patient but who is also invested in the long process of finding the right medication to help. There is no one pill that eases fibromyalgia. What works for my mom (who has also had fibro since puberty), probably won't work for me. I am on my 10th new medication in 3 years. None have worked well enough to provide measurable relief.

There are women (and men, although it primarily affects women) all around you suffering. We are silent sufferers. You won't know, just by looking at us that we are feeling unimaginable pain. You're more likely to notice how sad we seem. How can you help? Listen! Provide a supportive ear when we need to vent about trying yet another new medicine. Try to be understanding when your coworker needs to work from home because she can 't afford the effort to get dressed. Be patient. It may be annoying to try to support her through this because it is slow. Take a moment to consider how exhausted she must be by how long this battle goes.

My doctor wrote a note for my job to give me the legal right to work from home as necessary. In that letter she said, "Fibromyalgia is a life-long condition." That was a strong blow to the ego. So, next time you encounter someone with fibromyalgia, consider that she is fighting a life long battle for her quality of life.



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