The Awkward Question I Wish My Loved Ones Wouldn't Ask About My Chronic Illness

This isn’t directed at anyone in particular, I promise. This is directed at almost everyone I know. You may think you’re being considerate by asking me if I’m feeling better, but it’s not as comforting as you might think.

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

It sounds normal: Someone who’s acutely sick should get better. But the nature of chronic illness is just that, chronic. Sure, we have days one could deem “better” than other days, but we do not magically get better. Unfortunately, there is no wand or spell that makes you feel brand spankin’ new.

You’re probably wondering why it’s awkward for me when others ask if I’m feeling better. Here’s the reality. When you ask me if I’m feeling better, I’m somewhat confused. It is such a vague question. What do people even mean when they ask that? Am I feeling better than I was 10 minutes ago? Yesterday? Three days ago? A week ago? Can I answer with “E,” not enough information? The reality is, the status of my health can change at the drop of a hat. One second I can feel completely fine — and then bam, the pain envelopes my mind like a plague or I have a rash all over my body. So I don’t think you really mean to ask me if I’m feeling better now. It’s too variable of an answer; it’s not really what you want to know.

Although I couldn’t know for sure, I assume what you want to know is how I’m feeling. Am I having a generally low period or a generally high period? Am I getting out of bed and out of the house regularly? Or am I staying mostly in the house, sleeping a lot and spending a lot of time horizontally? Am I having a hard time staying in school, or am I able to balance my symptoms and my schoolwork?

I don’t like people asking me if I’m feeling better because if you ask me that at any given point, I’m almost always going to say no. I rarely see family members or friends during the day, and at night I always feel worse. The thing is, it’s not easy or fun to tell someone you haven’t been feeling better, because there’s nothing a sick person wants more than to feel better. Asking “How are you?” on the other hand gives me the opportunity to explain. It’s no longer a “yes” or “no” question. I can tell you today is a rough day, but yesterday was a better day. I was even able to stay out an hour longer than I expected! This gives me the opportunity to let my positivity shine through a difficult situation.

The last thing I want is anyone’s pity. After all, I wouldn’t be who I am today without Ehlers-Danlos syndrome (EDS), postural orthostatic tachycardia syndrome (POTS), hypothyroidism, irritable bowel syndrome (IBS) and others (only some of which are diagnosed). So please understand that I will always struggle with chronic illness, and no, I will not suddenly feel better. But I do have days that are better than others, and I appreciate the heck out of those.

Although I do want you to understand what a day in my life is like, I would rather tell you about those days when I can counterbalance them with the good days. “How are you?” gives me the opportunity that “Are you feeling better?” doesn’t. Please help give me the ability to be positive.