Thursday, October 17, 2013

On invisible disabilities, helpful suggestions, and how tired they make us.

Disclaimer: This will come off as a bitchy rant if you are one of the sort of people this was aimed at. I'm sorry, I woke up with the headache today, and am in no mood to coddle anyone.

So, to all of you lovely, wonderful people who pop up every time I mention that I have a headache to ask if I've tried X, Y, or Z: Yes. Yes I have. No, no it didn't work. Thank you for the suggestion, but it didn't work. It didn't work the first time I tried it, or the second, or the third. Maybe in a few hundred tries it'll work, when I have new glasses and my hormones are balanced and my thyroid levels are just right, but not today.

The last CAT scan was clean, Judith Hay is not applicable to these headaches apparently, and all that the vast majority of headache cures do is give me a little extra headache over on the other side. The Valsalva Maneuver is just useless in this case. Throwing up is ditto.

I've been getting these things for two years as of August. I was in Costco with Mum when the first one hit, and have been trying every hippy-dippy pseudo-science cure I can come across since then. I've been on prescription medication that has nearly killed me, and pop supplements like candy. Unless you've come up with something you can be sure no one else has suggested in the last two years, and I haven't found it on the internet, or my mother hasn't found it on the internet, in two years of tireless research? Yes, I've done it. No, it hasn't worked. The most unique thing I've had suggested -- thusfar only one person, though I had already tried it on my own without any measurable success -- was to induce vomiting. It worked for her daughter -- sadly it does not work for me. Neither does whatever batshit thing you've just suggested. Including and up to snorting cayenne and cow dung.

Am I giving up and being miserable for life? No, but there is the possibility that these things will never go away. That just means I continue taking my herbs and vitamins and minerals and supplements and going to my doctor (Who is also baffled and stymied) and taking care of my body and trying to get enough sleep.

Telling me I "deserve" not to be in pain is insulting and belittling. I do not need your affirmation that chronic headaches are awful things that no one deserves. I know you were trying to be encouraging and helpful and supportive, and you probably didn't mean it this way, but this is just insulting. In enthusiastically informing me that I don't deserve these things, you are implying that somehow, somewhere, is the belief that I do. Or that someone, somewhere, does in fact deserve to be cursed with chronic headaches, which is a fate I would not even wish on my rapist.

As for the "reason/solution"? If you want to help my solution to my headaches? Sign petitions to prevent incandescent bulb bans and support bans on heavily perfumed products and chemicals in public spaces. If you want me to come to your home, do your best not to utilize fluorescent bulbs, and shield them well. Do not use lysol or fabreeze in your home or car if you want me in them, and do not apply perfume if you want me within a yard of you. Bathroom deodorizer cones are right out. Chlorox/bleach of any kind makes me fall down. And if you know me, you know that I go out of my way on a daily basis to avoid all of the identified headache triggers.

And yet, the headaches still come.

And then I go camping, away from flourescents and fabreeze and deodorant, and the headaches still come. Three weeks in the back of a booth in the woods, living in a tent and completely shielded from noxious chemicals, and still the headaches come. After detox, after chiropractic, after massage and new glasses, still the headaches come.

Mind you, I think the new glasses are helping. But that's just one aspect of the storm. The more things I try -- the more things work on some small level -- the greater my understanding of these headaches are. I am living in a perfect storm of pain, and any one thing you suggest? Yes, that may treat one aspect of it. The vitamins and minerals and herbs help. Just a little, but they help. The new glasses help. After each chiropractic treatment, I feel the difference.

But nothing is enough. The pain comes back. I find myself huddled in a ball on the sidewalk clutching at the side of my face making alarming noises whilst passers-by gawk. Maybe someday (Tomorrow, next week, next month, next year, three years from now, ten... ) I'll have found all the keys, and the vast complex lock to "No more headaches" will finally be open.

Until that day? Yeah, I've probably tried it...

I know you just want to help, and are just trying to help, but... Gods I'm sick of it. Half of the things that make me tired about having an invisible disability can be summed up nicely with "Yes, it's real, yes, I've tried everything I can think of to make it go away, please stop." I do not feel that someone posting that today was a bad day for the chronic back pain that keeps them wheelchair bound would be getting responses about trying chinese herbs several years into the condition. Maybe I'm wrong, I don't know many wheelchair bound people, but I know plenty of (young) people with invisible disabilities. While, again, I cannot speak for the whole group, the number of conversations I've had with them about people telling us to "Take an aspirin and get over it!" or that "you're in your twenties! You're the best you're going to feel in your whole life!" put me, and my sisters and brothers, on the verge of tears. (The "you're in your twenties" came from a fourty-something in a coffee-shop after a con in Seattle, while I was attempting to look up a dispensary nearby so maybe I could not think about shooting myself, and my little sister was digging for her six bottles of depression and anxiety and thyroid meds so she could take them and the same. We simply looked at each other and widened our eyes in agreement of "This guy knows not..." and "Oh gods I hope not...")

Maybe you, ever-so-helpful person suggesting today "lots of sex?" do yourself have a chronic pain condition that makes your life difficult. Would you like me to advise you to go try chinese herbs to help? Or tell you that you don't deserve to have an aching back? To tell you not to give up looking for the thing that will make the pain stop? All that you are doing in offering your encouraging advice to "not stop looking" for a way to fix my head is implying that I have stopped, that I have given up to go crawl under a rock somewhere. 


When I found that the disability was making me so depressed I could barely get out of bed in the morning, I fought as hard as I could to get out of bed every. Damn. Morning. Even if "morning" came at three in the afternoon. Even if all I could do upon getting out of bed was to stumble the three feet to my walk-in closet and lock myself in there because even the sight of my roommates walking around not having headaches made me too depressed. And when I found myself locking myself in the closet every. Damn. Day? I took my laptop with me, and my sketchpad, and my pencil, and I wrote, and wrote, and wrote, and came out having done something, anything productive and creative. And all the while I took my vitamins and herbs and minerals and supplements and still the headaches came like clockwork. But the walls that had been up around my ability to write and draw since about halfway through college crumbled in that tiny enclosed space with nothing but my thoughts and the walls around me. I wrote and drew and papered the walls in art, and at the end of it had something to show for all that depression and headache. I'm now about halfway through the roughs for a several-hundred-page comic. I threw another short thing off over the course of vacation, and am going to a convention this weekend to sell this first, precious, completed thing. No, I can't hold down a job because my head hurts too much on too regular of a basis. But I can produce creative till all the bile that wells up is drained off, and all the puss is wiped away, and all that's left is raw, tired, and empty. And then all I can do is get in bed, go to sleep, and hope that tomorrow is a day in which I won't have a headache. 

Some days, it's true. Some days, some glorious days, I have no headache, and that is awesome. But every other day? Every other day, all you do when you suggest something is to suggest something I've done that hasn't worked. To remind me of one more thing that has failed to produce results. 

Who knows, maybe in a few more chiropractic visits, peppermint oil will start doing something. But the peppermint-camphor-gods-know-what-else Ayurvedic thing that my roommate brought back from india with her? It helps the other kind of headache, sure. Just not these.... 

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