Not all disabilities are visible.
In May of 2013, I was diagnosed with an invisible disease. It was the end of a 3-year journey I spent looking for answers. It started with an outbreak of shingles, followed by daily, unceasing pain and fatigue. I’d been to a rheumatologist, who tested me for autoimmune diseases with no results. I’d been to a neurologist, who tested me for MS with no results. I’d been to a cardiologist who tested my heart and found nothing wrong. I was desperate for an answer. I was tired of dealing with pain and fatigue every day with no explanation as to why. I tried pain pills – they didn’t work. I tried caffeine – that didn’t work. I tried cutting sugar – that didn’t work. I tried drinking only water – that didn’t help. After 3 years, I gave in and decided to call the Mayo Clinic and was finally given the gift of a diagnosis. Following a week of blood tests, physical exams, x-rays, and sleep tests, I received the one word that would change my life forever: fibromyalgia.
Fibromyalgia, as defined by the National Fibromyalgia & Chronic Pain Association, is, “a complex chronic pain disorder that causes widespread pain and tenderness to touch that may occur body wide or migrate over the body [and] affects people physically, mentally and socially.” Due to abnormal sensory processing in my central nervous system, I experience amplified pain without any real cause. No one knows exactly what causes fibromyalgia, though there are theories. For me, I started experiencing symptoms after a traumatic experience in 2010. There is research that shows there may be a genetic factor and my father tells me my grandmother had fibromyalgia. While I don’t know the exact cause, I’d like to share with you the good, the bad, and the ugly of this disease:
- This is not a fatal disease, nor will it shorten my life;
- I’ve learned to slow down and focus only on those things which are a priority;
- Fibromyalgia has shown me how strong I am;
- I have the flexibility to work from home, which helps me better manage my disease.
- Fibromyalgia affects every system in the human body;
- My common, daily symptoms include: chronic & widespread pain; chronic fatigue & insomnia; sensitivity to various stimuli including light, temperature, smells, and sounds; digestive issues; skin rashes and hives; dizziness; limb numbness; chronic headaches; and muscle stiffness.
- There is no cure – I will deal with this disease for the rest of my life;
- Unfortunately, I never feel 100% – I have some degree of pain & fatigue every day;
- I get dirty looks when I choose to use my Handicapped parking tag because I “look normal”.
Having fibromyalgia makes me feel invisible at times. No one in my life understands the pain I’m in. I have to say, “no,” to a lot of invitations because I just don’t have the energy. My daughter gets sad when her hugs make me cry out. For years, I chose to hide my disease because I was afraid of perceptions and limited opportunities. However, dealing with this disease has taught me to be strong in non-practical ways, to have compassion for others, and to find solutions to problems others may not have. I may never know why I was chosen to get this disease, but I choose to live every day with optimism and positivism that I will not let fibromyalgia define me. optimism and positivism that I will not let fibromyalgia define me.
This video explains Spoon Theory — a simple model for what it takes to manage invisible disabilities like fibro, with daily, unceasing pain and fatigue.