Pretty on the Outside, Pain on the Inside

“You don’t look sick.”

People with chronic illness and pain are pretty familiar with that phrase. At one point or another someone’s probably said that to you. I get it all the time. Usually from well-meaning people who are just trying to understand my situation. But sometimes it’s an accusation. Since people can’t see physical signs of illness, they assume I’m not sick at all or that I’m just exaggerating or trying to get attention.

I can understand it from an outside perspective. To most people I look like a healthy, active 25-year-old woman. It can be difficult to understand something without visual proof. And I think, as human beings, sometimes we’re skeptical when faced with something we haven’t experienced personally.

One of the most insidious things about pain is that you can’t see it. You can see blood coming from the wound, but you can’t see the physical sensation of pain. So, with illnesses like endometriosis and IBS, it’s impossible to see from the outside how someone is feeling. They could be in immense pain, but you would never know just by looking at them.

However,  the lack of compassion gets really frustrating, because it makes me feel like I have to hide myself as I truly am in order to avoid questions, judgment or criticism.

The reason you can’t see physical signs of my illness is because I try really hard to hide them.

You can’t see how pale and sallow I am because I wear foundation anytime I leave the house.

You can’t see my under-eye bags that have formed after many sleepless nights because I have concealer on.

You can’t see how thin I am because I make sure to wear layers or looser fitting clothing to try to hide my rib cage while I try to gain back the weight I’ve lost.

When I was taking intermittent FMLA (federally-protected Family Medical Leave) most of my coworkers were pretty understanding. With the exception of my boss (who obviously needed the information to help get my leave approved), I didn’t go into much detail with them about what was happening with me. My conditions are pretty embarrassing and I didn’t feel comfortable going into specifics. Since it was a work situation, it was a weird balancing act: I wanted to give enough information so that they understood my condition was serious enough to miss work, but I also didn’t want to make it really awkward with people I had to see at the office every day.

I did have one coworker who, frankly, just didn’t get it. She was an older lady and I think she was under the impression that because I was young, I couldn’t have a serious health condition. I understand it didn’t help that I tried to downplay my symptoms at the office. I did try to explain to her a few times that because I have chronic conditions I have good and bad periods, but that ultimately they’re here to stay. And she just didn’t really seem to grasp that.

Initially when I would return to work after a flare she would ask if I was okay and seemed genuinely concerned.  However, as time went on and I missed more work, she would ask, “Well, you’re all better now, right?” and “Why hasn’t your doctor figured out how to fix this?”

I would explain (again) that I had chronic conditions; that I was trying to get things under control with multiple specialists, but it might take a while. The sicker I became and the more work I missed, the more I got the general air that she felt inconvenienced by my illness and that she didn’t necessarily believe that what I was describing was legitimate. Granted, that was my own impression but there were some passive aggressive comments and it was a little bit unsettling. I think the comment that bothered me the most was a joke she would make that the results of the 2016 election were making me sick. To be fair, the election results were stomach churning, but that wasn’t the reason why I was dealing with things like debilitating nausea. She made that joke over and over and over, usually right after I had returned to work after a flare.

I called my mom for advice. She has suffered with serious chronic illness from the time she was in her early 20s and I have benefited greatly from her experience.

She told me, “Some people just aren’t going to get it and that’s okay. “

It was such a simple statement, but it honestly took a lot of weight off my shoulders. She was right; I can talk myself blue in the face and some people aren’t going to understand what I’m going through. It’s my life, not theirs and it’s unreasonable of me to expect that everyone is going to be accommodating, because that’s not the world we live in.

So, I let it go.

The comments didn’t stop, but I stopped reacting to them and politely redirected the conversation. I was frustrated at the situation, because, comments aside, I did like her; we had always pretty much got along and shared a lot of laughs. I continued to be cordial and professional right up until my last day.

I eventually confided in another coworker about the comments. It was my last week and even though I had stopped reacting, the jokes and comments still got under my skin. She mentioned that I should’ve taken it to my boss, and maybe I should have. I’m sure a lot of people would say that the way I handled the situation was a mistake, but at that point I was so sick and I had so many other things to focus on, I just didn’t have the mental energy to deal with it. And I do think it taught me a valuable lesson: some people simply aren’t going to understand my situation and there’s nothing I can do about it.

What I can do is be more honest and straightforward about my experience. I think the most powerful tool is for more people to come forward and be open about their own chronic conditions. Sometimes I just wish we lived in a kinder world that’s more accepting of people with chronic physical and mental illness.