Humans of ME/CFS

You do not see the anger, the frustration, and the failures. You do not see the pain or the grief of a once bright future full of opportunity. You do not see the hours and days full of waiting…waiting to feel better, most of all, but sometimes just waiting for the energy to simply wash my own hair. Then there is the waiting to see that doctor, that specialist, or to do that test. I am just constantly, endlessly waiting. You do not see me anymore. You do not see the tears, heartbreak, and loss of friends, family, and partners who were once were so close but are now just out of reach. You do not see my bones stabbing with pain or my muscles aching from just standing up a little bit longer than I should have. You do not see the crippling isolation. You do not see the constant struggle to remember and to forget what and who I once was. You do not see the undignified acceptance of my illness when I cannot get out of bed at all, not even to go to the bathroom. You do not see the days I do not eat because I can’t stand up and so I just go hungry.

You do not see the hurt from words aimed like darts: “You’re just lazy.” “You just need to exercise.” You don’t see that I would if I could. You do not see me anymore. This is my story now. I wish I could say it is a happy one, but the days come and go. Some days are “good;” others are painful beyond comprehension. ME/CFS is silent and brutal. It changes us, molds us into shells of who we used to be. Just because you cannot see us suffering does not mean we aren’t. I do not want to be silent anymore.

I am not invisible. I am still here in this body. I am a 27-year-old woman stuck inside a body that just cannot keep up and a mind that forgets more often than not. I am a 27-year-old woman watching my life pass me by one painful and heartbreaking day at a time. Yet, I am still here, and I will never stop fighting for those “good” days. I will never stop trying to be seen.