Being diagnosed with a chronic illness is nothing to be ashamed about, yet many patients hang their heads when discussing it. How often do you visit the specialist and hear, “Have you been doing your yoga?” or “Are you still eating gluten?” This affects our brain as though we have done something wrong and are being punished.
Loss of Friends
Unfortunately, those with chronic illness find themselves losing more than just their normality of life. Most people only accept excuses for ditching events a few times before they stop asking. I have found that tolerances last from one to three days before people expect you to function “normally.” When you don’t meet those expectations, their frustration grows. Eventually, those friendships fall away, and you find yourself struggling alone. It’s not that your friends are bad people. People just struggle to understand what they’ve not experienced personally.
Medication is a Crap Shoot
Realistically, fibromyalgia has such varied symptoms which affect each person differently. This makes it difficult for doctors to prescribe a magic cocktail of drugs. For the human test dummies, finding a good mix of medication can take years of trial and error. Each medication is wrought with its own set of fabulous side effects: dizziness, dry mouth, weight gain, depression, nausea, vomiting, fatigue. In my experience, any symptom I didn’t already have I gained through the medication. I started Savella in 2009. For six weeks I vomited anything besides Saltine crackers. It was a great way to lose the Prednisone weight, but ended up exacerbating my fibromyalgia symptoms. To be honest, I have been prescribed all three FDA approved drugs. None of them have made a significant difference for me.
The big D that we hate to talk about: depression. Depression is normal with any chronic illness. Rearranging your world after your auto-immune diagnosis is hard on the ego. Ego demands constant affirmation and appeasement, which most of us get from our families and our work. Chronic illness systematically removes our ability to feed our ego in those spaces. Add in the struggle to maintain housework, cleanliness, relationships, and hobbies and you have fruit ripe for developing depression. I’m not referring to typical sadness- I’m talking about the crying-for-days, can’t-get-out-of-bed, want-to-stay-in-a-dark-hole-forever kind of depression. You know this illness isn’t going to magically disappear. You know the physical symptoms aren’t going to get better or go away. And, quite frankly, it blows.
The other big D we pretend doesn’t exist: discrimination. I once had a boss who, when I shared my disability (and most chronic illnesses are disabilities recognized by the ADA) and asked for reasonable accommodations responded, “You’ll be fine.” Wow! Thanks for letting me know that walking an extra 700 feet won’t put me in bed for three days. How awesome are you?! That, my friends, is discrimination. And it happens. All. The. Time. That same boss proceeded to call out my unpredictable inability to walk quickly, hold a pen, type, or think in team meetings, which was embarrassing and humiliating (hello, shame).
And finally the third big D: disability. Many chronic illnesses are recognized as disabilities under the ADA. But it is still difficult for many to receive social security disability. Most who do eventually win do so because of a mental health disability, rather than just a physical disability. Fibromyalgia has gained recognition in recent years. Social Security published criteria in 2012, but is still largely difficult to win a disability claim. The symptoms are not consistent across patients, and are largely subjective, which makes them hard to measure and diagnose. This is one of the most frustrating aspects of these illnesses. We are too functional to be disabled, but too disabled to be functional.
Whether you have been diagnosed weeks or decades ago, know that you are not alone in your struggle. More than 125 million Americans are currently living with a chronic illness (5 million with Fibromyalgia). As people continue to shine a light on the after-effects of these illnesses, the aspects of shame and stigma will continue to decrease.