Introduction

During November, I’m writing a series of posts for National Health Blog Post Month. The event is organized by WEGO Health, a great organization that brings together health activists from around the world. What’s a health activist you might ask? A health activist is, not surprising, typically a person who deals with one or more physical or mental health challenges and decides to advocate for people living with that challenge as well as bring awareness to the challenge.

WEGO has shared an interesting set of writing prompts to inspire us. I hope you enjoy the month. I hope I can make you laugh a little, as well as think. I hope that I can guide you through uncharted territory, help to illuminate some things you didn’t know and inspire you to take action, however small, of your own.

Blessings,
Jane

Day 1 – Why I Write about my Health

Why do I write about my health?

One reason I’m sure of, is that it annoys certain people. I hope it’s the same people who, when I was a child, said, “Little children should be seen and not heard.” The ones who would have likely preferred if the maxim said, “Little children should not be seen or heard.” The ones who, over forty years later, still have the power to reduce me to silence with a look that says, “Are you still trying to be heard?” I don’t like such people. I suppose most of us don’t, but we all know a few. The people who said that stoicism worked for their parents, and works for them too. Annoyingly, they still seem to know how to talk.

I write also because in my youth, the act of writing itself was considered something akin to leprosy. Something shameful committed in secret because I was not writing, I suppose, a Pulitzer Prize-winning novel. I wrote science-fiction. Alas, there are probably a few dear readers who think it’s a good thing I learned about being a social outcast early.

I write about things I know intimately, including major depression and Sjogren’s syndrome. The former because many people believe it doesn’t exist, but rather reflects an unfortunate lack of willpower. The latter, if it’s even been heard of, is also often confused for an unfortunate lack of willpower.

I don’t believe this to be true, and that is why I write about depression and Sjogren’s syndrome.

When I talk about depression, I’m talking about major depression. Not a case of the blues that all people experience (and are entitled to experience!) from time to time. People who don’t or have never suffered from major depression have a range of different beliefs about it. Some I’ve encountered are:

• Depression isn’t a real illness; it’s just an excuse for being lazy.
• Recovering from depression is just a matter of snapping out of it.
• People with depression are crazy and are best ignored.
• People are depressed because they subconsciously broadcast it to the universe and attract what they emit.
• If people with depression pray/think positively/consume snake oil/climb a mountain at sunset, they will be healed.
• People with depression are just looking for attention.
• People who talk about depression just make the depression worse.

The people who hold these beliefs luckily haven’t wrestled with depression on the edge of a subway platform, in the depths of a shot glass of self-loathing or in the mosh pit of a childhood Baptist Sunday School.

I talk about depression because if any of those beliefs could remedy depression, I offer the challenge, don’t you think people would want to be healed? I’ve suffered with depression for 24 years, have tried dozens of traditional and alternative remedies and honestly wish some days that it was a constant battle I no longer have to fight.

However, I am surrounded by many beautiful souls, including my wife and soul mate of the past 15 years who count on me to keep fighting. I also fight for Roger, Neil and Clare: a few young friends who fought against this supposedly benign illness and lost.

I write for me and for them because we deserve to be heard and seen, to have our stories told and to be recognized, if not as heroes, as brave souls who continue to fight the dragon and live to fight another day. I write to celebrate us and to console us in the small hours of the night when it seems too hard to go on.

I write because I believe people with depression, or any other illness or health challenge, deserve to be seen and heard. I believe they deserve to tell their stories.

I write about invisible illnesses too. Depression and mental illnesses are just some a few of the ones you can’t see. Autoimmune diseases, medical mishaps, accidents, genetics and environmental causes see so many of us struggling with things beneath the surface of life. I write because I believe life could be better if so many people didn’t have to work so hard at hiding so much.

Take Sjogren’s syndrome for instance – no really, please take it – after 22 years, I’d like my deposit back! I live with Sjogren’s in its systemic form, which is somewhat similar to Lupus. Sometimes it’s Sjogren’s syndrome. Heaven forbid, Dr. House, sometimes it’s Lupus. Sometimes it’s Rheumatoid arthritis, CFS, MS, Hashimoto’s, Sarcoidosis, Diabetes, Crohn’s or any of the dozens and dozens of invisible illnesses that plague humankind.

There are a lot of myths about these diseases too, including:

• ___________ isn’t a real illness; it’s just an excuse for being lazy.
• Recovering from ___________ is just a matter of snapping out of it.
• People with ___________ are crazy and are best ignored.
• People get ___________ because they subconsciously broadcast it to the universe and attract what they emit.
• If people with ___________ pray/think positively/take this snake oil/climb a mountain at sunset, they will be healed.
• People with ___________ are just looking for attention.
• People who talk about ___________ are just making the ___________ worse.

I apologize if there are a lot of similarities. Often, the reactions are the same. It’s the reason I write a blog about depression and Sjogren’s syndrome and my rationale is that two quite different illnesses can be advocated for in the same post because of the perceptions.

Perception is the real dragon that needs to be slain. Perception kills people because millions of people suffer from these diseases in silence. They are too weak, embarrassed, ashamed, consumed by fighting the disease (or collapsing between rounds) to talk about it. The majority of those people are women. Although it’s another perception we try to fight, in my past experiences of talking about it and being shamed into silence, women are not meant to be seen or heard either – unless they have a gorgeous face and figure, in which case they can be seen, preferably naked.

I don’t mean to come across as a rabid feminist because I was raised as a good girl who toed the line and never spoke up. I just want to point out that there is an unfair slant of autoimmune illnesses in favour of women (refer to this page at John Hopkins Medicine Institutions for an example: autoimmune.pathology.jhmi.edu/whatis_spectrum.cfm). Many of these women were raised with the same expectations as me – to be caregivers and to put their own needs last. I did that for many, many years, and it made me sicker.

People don’t like to talk about illness. I think going back to the times of leprosy and syphilis, there’s a concern that autoimmune diseases can be transmitted. In my personal experience and research, I’ve never heard of transmission of autoimmune disease. You can’t catch it. The only disease you can catch is understanding, but only if you stand still and listen long enough.

I write about Sjogren’s because, like most people, I want to be understood. Heck, I’d settle for an ounce of acceptance. If you want to understand a little more about life with a chronic illness, read the parable of the ‘Spoon Theory’ by Christine Miserandino: www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.

I’ve long wanted to be an advocate for people with invisible illnesses as I’ve described above, but ironically, I didn’t feel qualified. For starters, I am frequently exhausted and in pain. It wasn’t my idea of an activist: some vital person who wears lycra beautifully, competes in triathlons and climbs mountains in their spare time, and manages to bound up the steps of parliament house or city hall several times a week, waving flags and petitions, and having run-ins with the police, captured on the evening news. My imagined activist was perhaps a bit of an exaggeration, but that person wasn’t me.

Me? My lycra days are over. This week alone, I’ve spent the nights in crippling pain: intense pain of an unknown origin in my right abdomen for the past 21 months means I can’t sleep on my right side. An injured shoulder from raking the leaves to protect our community’s ankle biters on Halloween night means I can’t sleep on my left side. Lying on my back just seems to tug at both injuries. My muscles spasm, my joints feel like they’re pierced with pins and the pain overload makes sleep impossible. Pain, nausea, fatigue: this happy trifecta means getting my part-time job done, let alone this essay, is a challenge. Words that once flowed so easily, get lost in the linguistic fog of my brain. For most people, writing takes time, but invisible illness seems to magnify the corrections, retyping and the general refrain of what-the-heck was I talking about?

However, I’ve come to realize that even broken people can be health activists. I’ve learned a few things in my dealings with depression, Sjogren’s syndrome and a host of other invisible illnesses over the years. Things that made me uniquely qualified to talk about my own health, no doubt, but also mean I have something to say that might relate to the experiences others are going through.

I write because everyone in this world has challenges. I write for those who won’t, can’t or aren’t ready to talk about it.

I write to make sense of the pain, to externalize the wound.

I write for the children who were never seen or heard. I write for the adults they become.

I write because talking about it won’t make you sick. In the case of things like depression, not talking about it can kill you. As the survivor of the suicides of a few friends, I can state this as a fact.

I write because it’s one of the things my illnesses have not taken away from me.

I also write because I’d like to continue annoying certain people.

Vexatiously yours,
Jane