Arthritis is the worst. I have a story about fibromyalgia today – brought to you by my dear friend Emmie, whose story I told in one of my most popular posts – and I’m also going to tell you a bit about fibromyalgia. Fibromyalgia is considered an arthritis-related condition, so I am including it in this week.
According to the Mayo Clinic, fibromyalgia is a “disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.” The Arthritis Foundation says, “This condition is referred to as a syndrome because it’s a set of signs and symptoms that occur together with no known cause or identifiable reason. Although considered an arthritis-related condition, fibromyalgia is not truly a form of arthritis because it does not cause inflammation or damage to the joints, muscles or other tissues. It is, however, considered a rheumatic condition because it impairs the joints and/or soft tissues and causes chronic pain.”
I developed fibromyalgia a couple of years ago, and according to doctors I have consulted, nearly 50% of arthritis patients develop fibro to some degree. Fibro needs to be treated by medications as well as lifestyle changes, and Emmie is an excellent example of how you can live a life containing these lifestyle changes and have it be an excellent one.
My name is Emmie and I am a dear friend of Kate’s from college. She was one of the first people my own age with an arthritic condition that I had ever met, and I am so grateful I did. Without her support, empathy, and guidance, I’m not sure how my own story of being diagnosed with fibromyalgia would have played out. The process was long, slow, and painful, to say the least. I have had chronic pain since I was 14 years old, but after getting a few tests done and having all pronounced “normal” and having all pronounced “normal”, I ignored it until I couldn’t anymore.
I had stomach problems that I knew needed attention, and it was through continual conversation with my wonderful primary care doctor over the course of 2013 that we realized that my symptoms were far beyond the normal range of either gastrointestinal or rheumatological problems. Each time I went back to her, there was a new symptom that was indicative not of stomach problems, but of neurologic and rheumatological problems (fibromyalgia): diffuse, all-body tenderness and pain without an obvious origin; tension headaches; trouble sleeping; poor concentration and short-term memory, what’s affectionately known as “brain fog” among spoonies; fatigue that wouldn’t go away with rest; and other symptoms that were each manageable on their own, but in tandem, not.
The formal diagnosis of fibromyalgia both crushed me and gave great relief to me. What I thought was 10 unrelated problems now became one diffuse umbrella explaining all of my symptoms, but now I was left with the pieces of a dysfunctional body and an uncertain future. Would I be able to continue my world adventures? My education? My hopes of working a full-time job? I was no longer capable of being the perfectionist I once was, and without that identity, I felt lost for a while. I had been lost already without having known it, but now all of my maps were gone. I only knew how to live my life as a healthy person.
With the help of my family, friends, medical professionals, and God, however, I decided to use the tears, pains, and feelings of being lost to be found again. Slowly but surely, acceptance of my new reality grew in my heart, and soon I felt called to help others accept their lives as well. I became an advocate for people with invisible illnesses (those that cannot be seen with the naked eye). I started a blog called “Illness to Wellness“, focusing on physical and mental health, where I teach all I know, share my story, and have the honor of hearing others’ – courage is contagious! I may have lost my identity of being a perfectionist, but I gained the incredible identity of being a voice for stigmatized, stereotyped, and misunderstood populations.
It has been an amazing journey, moving from the teary patient upon first hearing the diagnosis in November 2013 to a role model for taking charge and making as much change as possible in life, while compassionately and lovingly accepting what cannot be changed. I work really hard to maintain my physical and mental health as much as possible. That doesn’t mean there are no bad days – trust me, there are – but I am working to be my best. I may not be able to do everything that my peers can, but I cherish what I can do. I am a fiercely loyal friend, a college student and an aspiring medical social worker, an adventurer (when I have the spoons!), a musician and photographer, a human rights activist, an educator, and a daughter of God. I may need to sleep 9 hours a night and devote substantial time to exercise, quiet time, and other health maintenance activities to get through each day, but I fill the other hours with people and activities that I truly love.
If you have someone in your life who has chronic illnesses and they make time for you, let me tell you this: they love you. Time is precious. Some of us have to realize this and come to terms with this more than others do, but it’s true for every person. Your time is precious. Fill it with what you love – I know I have.