Don't be Afraid

When I was sick, angry and depressed, I felt lonely.

I wasn’t alone because I didn’t talk about it, though that didn’t help; I was alone because nobody close to me was going through the same thing.

My mother-in-law was sick in a much different way. There is no hemming and hawing about how real cancer is, or how deadly. It’s not something you fuck around with.

Fibromyalgia on the other hand...

People act funny when they know you’re sick. For the most part, they’re worried to say the wrong thing. Sometimes saying nothing is the wrong thing.

We live in a social world that’s hard to navigate under normal circumstances, and when you throw anger and depression and illness into the mix, it can seem impossible. We have our own experiences with depression and anger that colour our feelings and shape our actions. And we have either had encounters with sickness or not.

My grandma died of lung cancer a year after my mom-in-law died. As hard as it was to be back in a hospital room, it was harder to be in the waiting room. And in the future, though I’m not religious, it will be hard to be in a hospital chapel. Much harder to listen to last rites.

There was nothing easy about watching my grandma die, but my relationship with hospital rooms had already been negotiated, so there was one less thing to worry about.

Before I was sick, I suspected how lonely it would be, and now that I know, I’m less concerned with saying the wrong thing when someone I love is sick or angry or depressed.

If you’re afraid to reach out to your depressed daughter, or to your angry neighbour, don’t be. Even the tiniest gesture will give that person a moment of refuge from a world of loneliness. If you’re not sure what to say, start with ‘Hey’. If you normally say ‘Hey’ and nothing else, add a question like ‘How are you?’, and if you normally talk to them every day, but don’t discuss emotions, say something like, ‘Hey, you seem sad today.’ Later, you might add, ‘Is everything okay?’.

One day when she isn’t depressed, she may reach back.

The Second Opinion

Have you ever taken tab-top drapery, rod and all, and stood the whole contraption on its end? The material zips to the floor and it turns into a rod with nothing to hold up.

It was apparent from the beginning of my appointment with Dr. Second Opinion that he wasn’t interested in giving a second opinion at all. He thought I was wasting his time. He fully respected Dr. HC and his ability to diagnose Fibromyalgia. Another patient might second guess him one day.

I was worried when the speech he gave from behind his desk inferred that he held those beliefs, but I had not yet given up hope, because there was still the matter of an exam.

By this time I knew the pressure points off by heart. I was ready to shout out yeses and nos. I wanted to tell him that it hurt everywhere, not just at those points.

And then, as though he had asked Dr HC how to administer the test, he pressed as hard as Dr HC did. In that moment I was devastated. The power left my lungs in one relinquishing exhale, flattening my voice.

There was no reason to tell him anything because he was not listening. So he went about poking me like I was a fucking faulty doorbell and I stayed silent.

My lack of participation in the test didn’t dissuade him from announcing his confirmation of Dr. HC’s diagnosis. Because he blatantly ignored me and automatically took the other specialist’s word as if it were a message from the cosmos itself, Dr. Second Opinion went from pastor to perpetrator in less than twenty minutes.

I took a chance asking for a second opinion and I lost. Now that two specialists had diagnosed me with Fibromyalgia, nobody would dare dispute it. Not even me. In public.

This moment changed me.

The people who could help me could not hear me; and my body was speaking to me in a foreign language, one even more incomprehensible than the words that didn’t make sense anymore.

Under the thumb of Dr. Second Opinion, I became lost.

Reason # 1,843

People who know me, as a close friend or an acquaintance, know that I don’t talk about my health. Not many know why.

I’ve been a private person most of my life. In the beginning, I was emulating the behaviour of role models without knowing why privacy was coveted, or what parts of my life should remain confidential. At some point, I found my own reasons, especially when it came to my health.

Right after Dr. HC’s diagnosis, and months before anger settled into my chest, quickening the pace of my pulse, leaving me almost breathless far too often, I stumbled through my days without a clear purpose. The future was suddenly frightening. Every new or worsening symptom, like blurred vision or more dizzy spells, was a sign that my body was failing.

In those stunned days before I decided that I didn’t have Fibromyalgia, I told three people at work about it. One person was shocked that I confided in him, another was extremely sympathetic and told me about her sister who had the same thing, and another suggested time off work.

There was no way in hell I was taking time off work. Taking time off meant that I really was sick and I couldn’t face that possibility. No, the only solution was to shut up. I didn’t tell anyone else, and I sewed a glossy, magazine cut-out smile over my tired, pinched lips. I’m great! How are you?

Six months before meeting Dr. HC, my mother-in-law, who was like a mother to me, was diagnosed with Leukemia. Supporting her as she fought for her life gave me a certain perspective about illness. She never made me feel like my pain was less important than her cancer, but that’s because she was a great woman, not because it was true. Despite her encouragement, I was ashamed to talk about it. My symptoms were an inconvenience, nothing more.

This thing I was suffering from, whatever it was, wasn’t going to kill me. Complaining about my pain at work wasn’t going to make friends, and it wasn’t going to get me promoted. In fact, my sickness would probably hold me back. Keeping it to myself made me feel safe during a time when there wasn’t much to feel safe about.

There were a bunch of things that I assumed would happen if I told people. Here’s what I didn’t want: to be treated differently, to wallow in self-pity, to explain that I was sick with something I didn’t fully believe in, to be labelled as a sickie, to worry my friends and family, to hear about off-the-wall natural cures, to think of ways to bring it up seamlessly in conversation, to draw attention to my on-again-off-again relationship with intelligence.

Tucked near the bottom of my list of reasons to stay quiet was a reason that might have been at the heart of many others. Who cares?