I recently was scrolling on Facebook and saw a t-shirt that said “Most people fake being sick. I fake being well.” It stopped me in my tracks. It was spot-on. In that moment, it hit me that my whole life I’d pretended I was okay when I wasn’t. I still do it now.
Indolent systemic mastocytosis (SM) has left me with high pain tolerance. When I go to the doctor and they want the number for the pain scale, I always lower it. When someone asks “how are you doing today?,” I am quick to say “well” or “okay.”
Nobody wants to hear about how bad you feel all the time. I don’t want to live it, so I can’t imagine people want to hear about it, either.
I found the most convenient way for me to manage questions about how I was feeling was with a smile on my face. Even with close friends and family members, I’d hide the burdens that were weighing me down. The only people who knew I was sick, and I could not even be honest with them.
I don’t know if I didn’t want to be a bother or if I did not want to appear weak. That question is still up for debate in my mind now. Why has it been so difficult to let others know how severe the pain was that day, or how much depression and anxiety were holding me in the house, not wanting to leave?
When I started writing these articles I did come out of my shell. I write with truth, honesty and the hope that I am helping someone else cope with what I have been through, and am still going through now. But in person, I still put on the brave front. I am great!
“I fake being well.” When I first saw that statement on that t-shirt, I thought about it and knew at once that was what I did. But since then, I have taken a deep dive into my life and am trying to answer the question why.
Was I embarrassed of my disease? Did I not want to appear weak? The big question is if I let myself admit that I was sick… would I be able to continue working and playing hard? Would I still be me?
I did not back down from a challenge and loved the thrill of adventure. I did not want to be sick. I do not believe I am sick now. In my mind, ISM is just something I must deal with daily. Get up in the morning and just do the day to the best of my ability. I won’t slow down until my body gives out on me.
With the treatment I am on now I am doing better. That is a blessing. For the most part my symptoms are under control — as far as ISM. I am getting diagnosed with more symptoms that don’t pertain to my ISM. New doctors are on the horizon for me. I have already seen a rheumatologist and next is a neurologist. The osteoporosis is still bad, although the injections to treat it are working. Back surgery might be in my future. The depression, anxiety and PTSD are things that I will have to continue fighting for the rest of my life.
I take so much medicine. It’s a handful every morning and another handful in the evening. A shot once a week and a shot once every six months.
This disease has tried its best to destroy me as a person, but I never let it. It may take days and time from my life, but those are just battles. I will always come out on top and beat ISM. I am a warrior. I believe most people living with rare diseases are fighters. Let us dare not ever quit the fight for our lives.
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