When You’re 'Too Functional' to Be Chronically Ill, but Too Sick to Be Healthy

Last week, I went to a doctor’s appointment and all I could think about in the days leading up was how I wasn’t sick enough to see that doctor. All I could think about was that her other patients can’t work or drive and so I must be too healthy to have the same diseases as them. But then I thought about the days when I am that sick, and I realized it doesn’t have to be constant to be valid, it doesn’t have to be as bad to be really bad.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Feeling too much like a functioning adult to identify as “chronically ill,” but feeling too chronically ill to identify as “healthy…” It has taken the last few months for me to come to the realization that this is how I identify. Trapped between two worlds, neither of which quite fit me. On one hand, I feel so lucky that I am able to work a full-time job and do many of the things I want to do even while living with multiple chronic illnesses. On the other hand, I am constantly frustrated by the construct of trying to live in a “healthy person’s” world, knowing that I truly am not functioning on the same level as everyone around me. Living day to day with several “invisible” illnesses that aren’t always so invisible (dysautonomia, Ehlers-Danlos syndrome, severe allergies and Meniere’s disease, among others) means that I am constantly adapting to living and working with people who don’t always understand what I do and think about on a daily basis just to keep up with them.

I’ve thought a lot about the fact that even on the good days when I do feel like a functioning member of society, my illnesses are still like a backpack strapped onto me at all times. I think that almost everyone with chronic illness gets used to all of the annoying interferences — they become so normal. It is very safe to say that I am never surprised or caught off guard by sudden high-pitched noises and stabbing pain in my ears, or extreme hot flashes that make my face turn bright red, or my hip dislocating when I turn my chair, or blacking out when I stand up to grab something off the printer. But I constantly have to remember that all of these things aren’t normal for the healthy people around me. And because I work the same job as them and because I’m really good at pretending to be fine, these everyday things are shocking when they actually notice them.

Perhaps the hardest part of living in the middle of a sick/healthy spectrum is the balance.

One day, I might work an eight-hour shift, go to the gym, run errands, meet friends for dinner, clean the house and go to bed feeling accomplished and ready for tomorrow. And then tomorrow will come and I’ll be trapped in a day full of vertigo, dizziness, full-body pain and disorienting fatigue that leaves me completely disconnected from the world I lived in the day before.

One minute, I may be fully engaged in conversation with coworkers, laughing about the current drama and not thinking about anything else that’s going on. And the next minute, I’ll be overtaken by a wave of heat and nausea, a heart rate of 180, and muffled hearing that leaves me completely disconnected from the world I was living in the minute before.

I may not get to choose when I have good moments or bad moments or “healthy” days or “oh yea, I have a disease” days. But I do have an incredible opportunity to both live days in a “normal” world (whatever normal may mean), and also to know a world full of unbelievably encouraging and supportive people that survive each day with chronic illness. And I hope each day I can come closer to bringing those worlds together.

The strength and empathy that comes from living with chronic illness can empower us to be amazing human beings on the days that we feel healthy and “normal” and good. And on the days that we don’t, we still have a safety net to fall back on in the chronic illness community. Though it’s weird and hard and unpredictable, I feel pretty dang lucky to get both worlds, even if I don’t know when and where I’ll get which.

And so to all of you out there who feel the same sense of “too functional to be sick, but too sick to be healthy,” I hope you know you’re not alone out there.

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