These are some phrases we would commonly hear from doctors, friends, even family, who did not or could not fully understand what K was going through.
You don’t look sick..
You’re too young to have these kinds of problems.
Oh you’ve [gained/lost] weight!
Really, they have no idea what’s wrong? That’s so strange.
Well, we didn’t know how you’d be feeling, so we just weren’t sure if we should invite you.
It’s not hot in here, you’re crazy!
Why do you need the A/C on when it’s 65 degrees out?
Are you really sure you could handle a new baby all by yourself?
Oh just get some rest and try to feel better, you’ll be fine.
Why didn’t you just get some sleep?
If she had the words to explain how maddening it can be to hear those phrases/questions over and over again, she would have shouted them from the rooftop. Or at least put them to pen and paper. But perhaps I can be her proxy in this.
There are several kinds of chronic, debilitating, yet non-outwardly-obvious conditions and ailments that patients like K deal with. Just this week, in fact, I learned about a friend of mine whose wife is in similar circumstances. Certainly there was at least one other woman who K connected with over their shared illnesses as well.
One of them is fibromyalgia. I won’t pretend to understand it fully myself, but I’ve observed its effects and its sometimes flagrant misinterpretation by those who are fortunate enough NOT to deal with it. When combined with other forms of chronic pain — in her case, spinal disc disintegration pain — it can be nearly paralyzing. (Actual paralysis could of course be an unfortunate outcome of a botched surgical attempt to fix said problem, as ironic as that may be.) The problem here is that fibro (for short) rarely manifests with any outwardly obvious signs. To the world, K often looked fairly “normal” (for her, anyway; we’ll get into that later). It also comes in waves. Some weeks, or days, will be much worse. Sometimes, the lucky ones will have a day or two where it’s not as bad, where they can actually get up, put on a happy face, go out into the world and do something social. And then, often, they need another few weeks or months just to recover.
Anxiety is another one. People who don’t understand anxiety first-hand seem to think of it as merely something to be whisked-away by meditation or similar “mind-over-matter” hand-wavy remedies. (Again, NOT a medical expert, and not a patient of this myself.) The actual fact is that K, and others, have tried all such suggestions and remedies, to no avail. They WISH it was that easy. You have no idea how many times anxiety sufferers have lain awake at night, silently screaming at their own brains to “SHUT the hell OFF!”. They cannot control it. And you, as a support person, need to realize that. It’s not your job to repeat tired unhelpful platitudes. No, you must simply be present, reassuring, sympathetic, and supportive. For example, sometimes in K’s case, I would literally give her a bear-hug and squeeze her tight to help calm the nerves. There’s probably a medical term for this — I know I saw it in Grey’s Anatomy.
You may have noticed the quotes about temperature, at the beginning. This is probably a much rarer facet of the medical mystery than most people deal with, but it’s very real. Whatever was causing K’s nervous system to over-react and over-register pain signals, seemed to also cause a profound heat and sunlight sensitivity. We’d been to the beach in our 20’s, but not for the past several years. When she did get out and about on a sunny day, her face and chest became bright-red, appearing almost as an instant-sunburn. But it wasn’t a burn. It was redness from within, from the sub-surface layers of skin and blood and nerves. She had to sit in the car with the cold A/C blasting her face, just to feel normal again. And at home, we had to run the central A/C far below 70 to make her remotely comfortable. Often with the airflow pointed straight at her face and body. I even bought a special wall-register (vent) that could be more easily adjusted than most, so that when she was sitting in bed it could hit her squarely.
Again, to someone who does not understand or has never felt these effects, this would seem ridiculous. Surely, you’re just being a spoiled person, wanting such cold air all the time? And occasionally I felt that way too, as I was begging the electric company to give us a break on our payment arrangements, or filling out a renewal form for the medical discount. Yet I can assure you, it was a very real, tangible effect. The few times when the A/C broke down, she literally became sick without it, as the temperature rose into the 80s.
But back to pain, and the more common facets of whatever this unholy conglomerate of diseases and disorders may have been. Those without chronic pain cannot understand, and are quick to dismiss or to gloss over the struggles that people like K face. It becomes easy to overlook them in your social plans, because you know that, 9 times out of 10, they will probably decline. It becomes a bad habit to offer platitudes or cliches, because you feel there’s nothing else you can do, or because you think that the “standard” solutions and treatments “should have worked”, or that “they’re just stubborn and won’t try them.” When in fact, they have tried; they have NOT worked; and they are TIRED of trying and trying again just to appease the next person who thinks they’ve got it all figured out.
Those who do not live the pain, also find it easy to assume and pass judgement. When she couldn’t eat anything but buttered toast for nearly 2 weeks straight, due to constant nausea; “Did you lose weight?” Or when she drank more than a couple cans of soda per day because it was the only substance that actually tasted like anything; “Oh that’s not good for you, maybe that’s part of your problem.” When she couldn’t get out of bed for several weeks and developed a sore that I had to dress, lance, and dress again, until it faded away; “Why didn’t you just go to the doctor?”
With a chronic pain patient, especially with these other complicating conditions, doctors are no longer your friends. They’re like little espionage agents, working for a government that doesn’t want your citizenship, secretly sharing information on you when it pleases their whims, so that you never know when you might suddenly be cornered in a back-alley and interrogated about your medication regimen. Or, even worse, told that you have to throw it all out and start from scratch because one agent doesn’t trust the other’s case-history. When in reality, the scans and the intelligence all shows the same thing: It’s complicated, messy, difficult, and probably beyond any single person’s expertise. But do spies ever play well with other spies? Not if movies have taught us anything.
No, the best K could do was to find, thank God, one solitary compassionate soul at a local pain clinic who at least cared enough to LISTEN, to be understanding, to make medication changes slowly and gradually, to fight for her case when others would dismiss it, and to always strive to put her comfort and sanity first, even above “standard medical procedure”. Such a luxury was never afforded her at the urgent-cares, ERs, and hospitals.
But I’m already nearing 1300 words, so I’m going to save those hot-buttons for another time and post. And migraines.. somebody remind me to add a blurb about migraines next time. ❤