I was texting a friend who pretty accepting of my illness. I was talking about symptoms of my stomach disorder, gastroparesis, and how it was starting to move away from my stomach and to my bowel. He became excited and thought it meant I was getting better. But I knew it was just a temporary lapse in symptoms. At the same time, I was trying to explain that I was in a lot more pain than usual. He replied, “You’ll get through this!”
At the time I just changed the subject. But thinking back, I started to think about how for many chronically ill people, that response to illness is just not realistic. Non-chronically ill people often don’t have as much understanding of illness, especially illnesses that aren’t visible or don’t affect more visible things, like hair growth or mobility. For non-chronically ill people, illness works one way: you get sick, you “power through” or “battle it,” then you “beat it!”
Gosh, how I hate the phrase “beat (fill-in-the-blank) illness!” People don’t realize that:
1. Not all illnesses go away.
2. Even if an illness “goes away” or is “beaten,” its mental and physical effects can last a lifetime.
People who live in the pain and isolation of illness can reach recovery. But recovery doesn’t mean “as good as new.” Medical PTSD is a real thing, and many experience it.
In addition, people with chronic illnesses like lupus, epilepsy, fibromyalgia, postural orthostatic tachycardia syndrome (POTS) and other ailments may live their whole lives with illness. While a number of major treatment updates or selfies in the ER might change on their Facebook, their day-to-day is still filled with pills and doctor visits, and for a lot of people a dull pain or fatigue follows them around. Not to mention memories of holidays and birthdays in the hospital.
I’ve only been ill six months and I’ve already missed two of my favorite holidays – Easter and Gay Pride – due to medical reasons. You might also experience the trauma of watching other chronically ill friends or “spoonies,” as they are called, struggle as their illnesses flare up while you are in relative peace. The last time I saw one of my friends was when they were being wheeled out on a stretcher from the community center we both worked out at before our health took a dive. The next day I had to leave to go to the Mayo Clinic.
So ultimately this is my reality. I have gastroparesis, fibromyalgia and bipolar disorder. I am also transgender – a.k.a. the struggle is real, and it is lifelong. Getting through it is getting through the rest of my life. I will make it through.
Your words are encouraging (on certain days, to be honest). But please stop thinking when I go to a specialist or have surgery or get out of the hospital that I will be “healed.”
Please realize that “making it” for me is me living the rest of my life.
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Thinkstock photo via James Woodson.