Humans of ME/CFS

Before I got married, I was a very active, healthy, social person with plans to open my own business, get married and to start a family. I was diagnosed in 1991, only months after getting married. When we took our vows, we never expected to have to deal with “the worse” part of “for better or worse” for quite some time, but we had no choice. I tried to continue working, but had a miscarriage and then trouble conceiving, so I was told it was either a career or a family, so I chose family.

I had two hard, complicated pregnancies, but was blessed with two healthy children. I wish I could’ve shown them my strong, energetic, hard-working, fun side. But unable to be the PTA mom, class mom, working super mom, like most of the other moms, I instead was only able to show them my loving, weak side…baking for them when I had the energy, reading and playing games with them inside, instead of running around and playing with them outside, and hardly ever being able to have them invite friends over because it would be too much for me to handle without extra help.

I still to this day don’t talk or tell many people that I have ME/CFS because it’s too difficult to explain or defend. Except for my immediate family (and even they don’t understand it always), I really don’t have any support. I don’t have a special doctor to treat me and have survived solely on pacing myself and trying to live as healthy of a lifestyle as possible, within my limits.

I know I am much luckier than many people with ME/CFS, I am not bed- or chair-bound, but I still mourn the life I could’ve had, the income I could’ve had and the friends that I’ve lost along the way since I’ve had to live a very unsocial lifestyle. I am very angry that ME/CFS is not more recognized and that I’m embarrassed to tell people that I have it because I’m afraid of how they will react and I don’t have the energy or brain power to explain and defend my illness to them. If only people (and some doctors) would understand and treat us the same as they would if we told them we had MS or Lupus, or any other recognized illness…