The reason you don’t know I’m sick is because I’ve learned to fake it. I’m sure you’ve encountered someone today that you don’t know is ill. People with invisible illnesses don’t usually go around screaming “I have an invisible illness!” or introduce themselves with “It’s nice to meet you. I have bipolar disorder/chronic pain/irritable bowel syndrome.” It’s a subject that has to come up organically and then the person with the illness has to decide whether or not they want to say anything. Most of the time, we don’t. Why not? Several reasons.
It can be hard to explain.
If we just had broken leg, saying “I broke my leg skiing,” would explain the situation and the conversation could move on from there. With chronic and invisible illness, the conversation can be significantly longer, especially when the illness is not widely understood. For example, diabetes is, unfortunately, gaining more awareness. Most people know what it is. Bipolar disorder, on the other hand, is not only still largely misunderstood by the general public despite affecting almost 3% of the U.S. population, it is also complicated by being a spectrum disorder. Each person has their own version of bipolar disorder. There are several subtypes and symptoms vary among the subtypes. It’s starting to sound more like a doctor’s appointment, not exactly “Let’s go have coffee,” conversation.
It’s not our primary characteristic, but it does shape who we are.
If you were to ask someone to describe you, would you want the response to be a laundry list of your illnesses? Me either. “I’d like you to meet my friend. She’s bipolar.” That description could be accurate, but unless you’re finding common ground with someone based on having bipolar disorder, the second bit isn’t really necessary. We are a lot more than our illness. We have families, jobs, activities, hobbies, favorite sports teams and television shows. You get the picture.
However, bipolar is an incredibly powerful disorder. It has the ability to incapacitate those who are afflicted. Hospitalizations are not uncommon. Suicide and suicide attempts are not uncommon. When we feel too depressed to leave the house, it affects us. Increased irritability affects our relationships. Something as small as not getting enough sleep can trigger larger symptoms so we have to be incredibly vigilant to minimize the effects. Even when we’re at the midpoint/euthymia, our quality-of-life values are different than the general population. Basically, it’s hard to live with.
“You don’t look sick,” can actually be hard to hear.
I’ve been told many times that I don’t “look sick” or someone had no idea I dealt with bipolar disorder. On one level, the most important, it’s a great compliment. I am able to function well enough that society at large cannot tell that I struggle with something like bipolar disorder. Score one for me.
Then I think too hard about it and think I need to put extra pressure on myself to stick with it. There is constant pressure to keep up appearances because sick people are downers. I don’t actually think that, but it’s a stereotype. We often push ourselves beyond what we probably should just to keep up with unrealistic expectations, whether those expectations are put on us by others or ourselves. Luckily, for those of us with strong support systems, when our illnesses are exposed and baring their teeth, we get to show our vulnerable side and it’s understood. There’s a cushion to fall on. We don’t have to take the energy to fake it, and that is incredibly comforting.
We feel guilty.
We feel guilty because our disorder affects our relationships. We feel guilty because we are seen or see ourselves as a drain. We feel guilty because we need support. We feel guilty because our disorder makes us feel guilty.
Because we don’t “look” sick, it can be easy to think that we shouldn’t feel sick or be sick. There are articles that pop up on social media by the minute that give the secrets and tips to happier, healthier lives. So why aren’t we happy and healthy? If we don’t look sick, then our illness can’t be severe enough that we can’t just “perk up.” Right? Wrong. Our brains are structurally different. Should we put the same expectations on a heart patient?
We feel afraid.
With bipolar disorder, fear is not hard to come by. Fear and anxiety go hand-in-hand. We are often afraid that if someone were to find out about our illness, it would be awkward and skew the relationship. A step up from that is rudeness and stigmatizing. If there’s anything that makes anxiety worse, it’s fear of escalation. That doesn’t only work for worrying about being outed. It works in general with bipolar disorder. What if my disorder gets worse? What if my family feels alienated? Those are just questions about the disorder itself. I won’t even get into other worries and fears we experience. It would be anxiety-inducing for all of us.
One of the most important lessons I’ve learned having an invisible illness is that trying not to judge others is one of the best things I can do for them. Someone taking an elevator up one floor use to absolutely incense me. Now, I remember that I don’t know what’s going on with them, and, frankly, it’s none of my business.