When People Assume 'You're Doing A Lot Better Now Though, Right?'

When you are first diagnosed with chronic fatigue syndrome you don’t think about what it’s going to be like this far down the track, or at least you try not to. The doctors say the typical length of this disease is three years, and I really hope that’s still true as I wouldn’t wish this on my worst enemy. Chronic fatigue syndrome affects people in varying degrees, and in some ways I could be considered lucky. I haven’t been bedridden for the last seven-and-a-bit years, but there have certainly been long stints that I was.

What strikes me as I go into my eighth year of my disease is how the people around me still continue to make assumptions about my health. Whenever mentions of my chronic fatigue come up I am met with this statement disguised as a question. “You’re doing a lot better now though, right?” I am immediately aware of the exhaustion in every part of my body and I can feel my mind beginning to check out. Because what can I say to that? “No, actually I still feel like crap on a regular basis.” I guess I could, but after seven years it feels futile to continue justifying my illness, and in that moment I am physically incapable of really explaining what is going on. I try not to vilify these statements, instead choosing to believe they stem from the desire to believe I am better, and at worst simple ignorance.

What I would say to my loved ones in that moment if I could, if I wasn’t already exhausted from getting dressed, leaving the house, engaging in small talk and standing for any length of time is: “Some days I am doing better, some days I am able to live a normal day and not pay for it too much. But there are still days when getting out of bed to lay on the couch is my biggest achievement. Even when I am feeling OK I am terrified of pushing too hard and ending up back in that dark place. My last relapse was horrific and my dog was my only bright spot. I felt so fatigued, so beyond tired it barely felt like I was alive. It’s not only the fatigue that I struggle with, it’s the constant infections, the muscle pain, the inability to think clearly and all the things that go wrong in every system of my body. Going on any form of social media feels physically painful — I hate the jealousy that twists me as I see people actually living. I feel trapped in my own body which makes it very hard to love myself. I’m terrified the last two years of my life have been a waste and I’ll never be physically capable of being a teacher.”

But I don’t, because I know no one wants to hear that, really seeing the depths of another person’s pain, and feeling like there’s nothing you can do sucks (just ask my mother). So instead I smile and reply “Sort of” or “It’s a bit more complicated than that” and hope that maybe it will give the person pause, but know it probably won’t.

What makes this “question” harder is that I lost my grandma seven months ago and she was one of only five people who continued to ask me how I was. She may have had dementia and forgotten who everyone except about 10 people were, but she still remembered to ask me and my mom any time she saw us. Reflecting back on her life reminded me that it’s not too much to ask people to continue to try to understand what we are going through and that people can if they really try. So in memory of her, I will try to remember these things when some one makes an assumption about my health:

Not everyone is like the people in your past, i.e. not willing to believe you are ill.

You can’t expect people to understand if you don’t open up.

People may not understand, but that doesn’t say anything about you.

Some people will endeavor to understand, and these are the people to surround yourself with.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.