Invisibility is NOT a Superpower
ME/CFS is considered an invisible illness. From my perspective I see that in 2 different ways.
1. You look healthy and so, your symptoms and their effects are not visible to others.
Early on in my illness, my symptoms and the degree they affected my life and ability to function was invisible. To my friends and co-workers I was exactly the same. I looked healthy, I smiled and laughed. And like many people undiagnosed, I rarely complained about how bad I was feeling because my doctors said nothing was wrong and I didn't want that stigma that many suffer. Being a complainer, labeled as lazy, a hypochondriac. On the rare occasions where I would try to express it, I was shot down with statements like, "I think you WANT to be sick.", "Everyone is tired.", "You're just not trying hard enough.", "It's all in your head."
Even after getting diagnosed, many people say things, like. "Well thats not even a real disease.", "You're just depressed, you can take something for that.", "you'll never get any better if you don't exercise.", "I'm tired all the time, I must have that too.", "I have ________, and I still manage to do things."
Even today, being disabled by ME/CFS, when I am able to leave the house for an appoinment I look totally normal. So if you see me (or anyone with ME/CFS) and you say "You look great!", part of me is happy to be looking normal, but the other part is wondering if you're secretly thinking ..."She looks fine, what's her problem?"
2. You are so sick, stuck in the house or even in bed, that you have actually become invisible.
As time went on and my illness progressed over the past few years it has been harder to participate in normal activities. FIrst it was my job, then vacations and family outings, then activities like meetings with my congregation and volunteer work. Soon I was no longer able to get together with friends, talk on the phone, cook or shop. FInally I became housebound to the point that I only left the house for appointments. Over the last 12 months I have only left the house 24 times and all but one was an appointment. These days I spend most of my time in bed or lying on the couch and am completely dependent on my family.
Being alone most of the time, I do feel invisible. Watching my friends post their lives on Facebook makes me smile most of the time, but it also makes me realize how time is marching on and has forgotten me here in my bed. Years have been stollen from me by this horrible illness and I'll never get them back.
I don't want to end on a low note, because in spite of all this, I am still optimistic that I will regain my health one day. But if there is anything that you take away from this, here is my hope…
If you have ME/CFS whether mild or severe, realize that no matter what your misinformed, well meaning friends say, what you feel is very real and try not to take their words to heart. Trying to explain the fatigue and post exertional malaise of ME/CFS to someone who hasn't ever experienced it, is like explaining colors to someone blind who have never seen them. Most people really do mean well. And for those friends who truly want to know more, check out the article on this page.
If you know someone with this horrible disease and you are having a hard time understanding, please explore my website and learn more about it. Resist the urge to compare what they are going through with anything you have experienced unless you or a close family member has been diagnosed with ME/CFS. Listen. Be there. And try to make them feel like they still matter. That they are not forgotten. They are NOT invisible.
