Don has Marfan’s syndrome. It’s a genetic condition that he was born with. It’s the cause of his height (he’s 6’10” tall, 2.09m), his overall build, the way his fingers are shaped. It’s also the cause of his intense chronic pain, his wheelchair use, and his risky heart condition. It’s a spectrum condition – some people don’t have the chronic pain, but do have serious issues with their eyes. Some people don’t know they have Marfan’s until they have an aortic aneurysm and drop dead at 22 with no warning. Don grew up thinking he wouldn’t make it to 25, and his 30th birthday is next month.
Don also has Cancer. His cardiac specialist noticed the lump in his thyroid last year, before his serious ear-related surgery [1. I like to joke about his having too many holes in his head, but it turns out the problems with his mastoid were so bad that he could have died from a brain infection. Don’s health is never having to say you’re exaggerating.], and the whole thing’s been weaving its complicated way through Nova Scotia’s health care system ever since. He had surgery to remove his thyroid in September, with a doctor who assured us not only that there should be no problems with his surgery [2. Don can no longer speak above a whisper.], but that he should fully recover in a week or two.
Don still hasn’t recovered from surgery.
My mental jury is still out on whether or not Cancer is a disability. I think Susan Wendall makes a pretty good argument for it, by talking about how people with Cancer go through both social stigma and a lot of pain of treatment, but I admit to not knowing anyone with Cancer who’s described it as a disability, and I’m big on self-identifying. In this case, though, I’m going with Cancer = sick, because it’s allegedly cured. Everything’s fine now.
Except for the bit where none of the doctors along the way have known how to deal with Don’s disability at all. It’s like they somehow missed “Disability 101” in Doctor School.
We had the doctor who decided to start bending Don’s fingers back with no warning, discussion, or permission, apparently just to see how far they’d bend back. How this is relevant to a thyroid consultation, I don’t know, but Show & Tell Marfan’s Syndrome is pretty shite behaviour when one’s waiting for a Cancer diagnosis. Similar stunts have happened so often – bringing in additional students so they get a chance to “see a classic Marfan’s Patient”, like he’s a specimen in a zoo, or having Don’s classic Marfan’s features pointed out and discussed at length, as though he’s not right there.
The technician who did Don’s chest x-ray (to make sure there were no clots of Cancer in his lungs) baby talked to him, we can only assume because of the wheelchair, since we haven’t been able to get anyone to actually acknowledge that happened, let alone that it was a problem.
When he went in for the ultrasound on his neck… Oh, gosh, where do I begin? With the wheelchair inaccessible waiting room (you can wait in the hall!), or the refusal to allow Don’s wheelchair to even be in the room when he was being examined? As though able-bodied people are asked all the time to leave their only means of getting away behind. Plus, you know, the refusal to believe either of us that it’s common for people to play Show & Tell Marfan’s Syndrome.
And then there’s Doctor Fail. Oh, Doctor Fail, I hate you so much. The fast recovery time you assured us would happen, even when we both emphasized how long it took Don to recover from surgery previously, because he has a chronic pain condition. The bit where you prescribed far too low a dosage of thyroid replacement medication for someone of Don’s size, to the point where his energy levels dipped so badly he couldn’t handle reading fanfic because the plots were too complicated for him to follow, and he couldn’t get out of bed at all. [3. The radiologist increased his dosage to five times the amount. That was weeks ago. He’s still recovering.] Or, hey, the bit where you insisted that all mailed-out appointments needed to be confirmed by phone – despite knowing that Don can’t talk on the phone anymore because of the damage your surgery did to his vocal cords.
The latest round of fail is the radiation therapy he needs in post-Cancer treatment. I don’t even know how to describe the level of care he will need for this. They will need him to come right back off the thyroid meds. They need him to not be within 6 feet of anyone for any length of time. They need him to shower every single day, and then clean the shower out immediately. They need every plate he touches to be washed immediately, and all of his clothing washed immediately after taking it off.
When Don tried to point out that this is not something he can do, even when his thyroid meds are working just fine [4. Don has a homecare worker because normal showering and the like isn’t something he can currently do without aid], the response was a very cheerful “Oh, you’ll manage!”
Y’all, we are not managing. I can’t tell you in words how much we are not managing.
If we were a household of two able-bodied people, these would still be problems, but they wouldn’t be as overwhelming and dangerous as they are. If we were both two people who didn’t have mental health conditions [5. Don has Chronic Depression/Unipolar Disorder something-or-other, and I have a diagnosed mental health condition that I chose to never speak of on the internet because even the comments here at FWD include people who have merrily informed one and all that women with my mental health condition are bad.] this might be a bit less dire than it is. But as it stands, this has become a very very serious problem, and one that the medical people we are dealing with seem completely unable to address at any level, or any point.
The latest, today, was the psychiatrist telling Don to just wait things out and see if the anti-depressant that hasn’t been working for months suddenly kicks in, so the suicidal thoughts and horrible guilt at “what a burden” he is (he’s not!) both go away. Like magic, I guess. Because it’s normal, I guess, to be depressed, disabled, and Cancerous, so we shouldn’t treat it.
Our family has been in a pretty bad state for months now, because of so many people along the way, including us, assuming we’ll manage, somehow.
The support services designed for families ‘dealing with Cancer’ are not designed to include families like ours. Don can’t leave the house much, because it’s winter, and uncleared snow can be a problem. I’ve been so swamped that I’ve been out of the house for 18 hours a day at least four days a week. Support groups and services don’t seem to consider ‘wheelchair’, ‘mental health condition’, ‘complicated family situation’.
And so, here we are. I don’t think this is some tiny crack we’ve managed to slip through, but a big gaping chasm that has a bridge that’s passable only if you’re “general population”.
I honestly don’t know what we’re going to do. I guess we’ll manage.
There’s not much to do, but manage, I guess.
How often do you want to give up (not commit suicide) but just stop fighting it? I have a good relationship with my mom and I want to be back in the days of yore when moms made everything better.
I tried radiation for my thyroid (graves/hyperactive) before getting it taken out. My sister had to stay at my dad’s for the weekend – she was 11. My mom was allowed to be around me – are you cleared to be around Don?
(Radiation medicine was freaky – the nurses are practically in hazmat suits, the precious pill is in cotton and, “Here. Put this in your body.” Oh, and how sick the drive back was. Yes, major parkways are just as twisty as a back road! Who knew?)
My sympathies when it comes to thyroid messes. I know this may seem obvious, but ask Don to keep an eye on his calcium as well – sometimes the parathyroids can be messed up as well – mine were the “size of pencil erasers” because of the swelling of the thyroid.
Oh, here comes my chance to show off some internet larnin’ – “I’m sorry, that sounds terrible.”
I love you. You’re both wonderful. I’m so sorry things are so hard. How could anyone be expected to manage all that? But they’re so blithe. Chipper. Upbeat. Positive.
*waves to Don*
I also had thyroid cancer, and while I wouldn’t describe it as a disability in itself, it has certainly led me to be disabled – a great deal of that was the long delay in getting a diagnosis, followed by undermedication for my size. Not being able to read fanfic sounds awfully familiar. Oh, and the great heaving sighs at having do a chest X-Ray on someone who doesn’t fit their idea of whatever a perfectly healthy, able-bodied cancer patient should look like (I’m too fat, apparently)! Best of luck to Don and to you with the radiation treatment, and with all the hassle that blithe assumptions of able-bodiedness (and able-mindedness) brings. Either good luck or a mind-control ray.
I am completely clueless about… EVERYTHING – I mean, reading footnote 5 I’m thinking, “Oh, but please tell me because I’m CURIOUS”, as if that’s what’s important – SO clueless about things. And even I know not to BABYTALK to someone because they’re in a wheelchair, not to treat a wheelchair like some cumbersome, non-vital object, not to grab at people’s differences. I can’t share your situation or empathise properly but oh, do I feel some of your frustration. Health care workers SHOULD know better.
It’s simply horrendous how you and Don are treated!
“Oh, you’ll manage…” As if there’s this magical reserve of strength and ability that you somehow just never bothered to tap into because you’re so negative and defeatist. Agh, it makes me SO ANGRY! (But I guess that’s to be expected. I have a mental illness after all, obviously I have failed positive-thinking class, too.) *sends good thoughts*
There is no Disability 101 in medical school.
I am saying this as a person with a disability who is also a doctor.
What there is instead are senior doctors frequently and usually unconsiouslessly passing on negative, pitying, ridiculing, outdated or otherwise othering attitudes about people with disabilities to their trainees, who then go on to apply those attitudes into their daily practice. Soon, those trainees will be passing on those same attitudes to their trainees, because while doctors often work to keep up with the latest medical advancements in new medications and treatments, no one makes sure they keep up with non-othering attitudes.
My hope is to work to change this after I’m no longer a trainee myself. I’ve seen glimmers of hope from some of my education attempts so far. But in the meantime it seems to be up to us, people with disabilities, to provide the education. Which, when we are also the patients or the patient’s family, is horridly unfair.
This is so much DDDDDD: I wish it wasn’t true – but I know it is. It shocks (even though maybe it shouldn’t? /pessimistic) and saddens me to such an extreme that I don’t really know how to describe it.
If there’s anything I can do, let me know! I’m in Antigonish, so probably not because of distance, but if there is feel free to ask.
How awful! And I suppose if you send a letter demanding a hazmat suit for Don’s homecare worker and whoever does the cleaning, or he refuses to leave the hospital because you don’t have suitable facilities at home, they’ll pretend to think you’re taking the piss and treat him even worse. Argh.
This is just all kinds of wrong. I’m so sorry.
even the comments here at FWD include people who have merrily informed one and all that women with my mental health condition are bad
You know, there is a lot of things in this post that make me think, “WRONG. How can people BE like that?” But this is definitely the wrongest. Because this is supposed to be at least some measure of an accepting space.
This all really, really sucks on so many levels. I wish I could give you and Don hugs. Provided that both of you find hugs comforting and not painful.
I am completely 100% in agreement on “medical services not designed to accommodate disabled patients”. I would further add that these same systems are also not designed to accommodate the disabled partner of someone who is otherwise nominally able-bodied.
Just sharing in the general *headdesk* fest going on here…
I concur with doctors not understanding or accommodating disability; even when it’s the same condition they’re supposed to be treating! I’ve gotten a number of MRIs where I had to argue with the technician that no, really, you need to let me move in between sections or I will be in so much pain you will not be able to get a good image. And inaccessible waiting rooms. And if you dare speak up you’re looked at with that disbelieving stare, nevermind that it took all your remaining resources to gather the strength to speak up at all….
My sympathies for what you and Don are going through.
Sending hugs and supportive thoughts.
As Nightengale says – there is no Disability 101. I’m a medical student at a medical school that’s considered one of the more progressive, with lots of patient contact and emphasis on communication and patient autonomy. This hopefully should mean that my colleagues are less likely to do some of the more blatantly awful things you encountered, but they still don’t get taught a lot of this stuff. I’ve taken it on to myself to explain the social model of disability in groupwork, but it’s just a drop in the ocean…
(Oh, and the radio-ablation stuff that you partner is having? Here they keep people in hospital in lead-lined rooms until they’re much less dangerous, so not needing the multiple showers, but still needing to avoid close contact for long periods)
I don’t get why people who belittle ppl with your condition in comments arent moderated out.
Oh, they are, Amanda, but we still have to see them!
I want to sympathize with the ogling of the Marfan’s as if Don wasn’t there. As a pre-teen, I had a severe skin condition that led at one point to a month-long stay (without parents of course) at Mayo in MN. It was truly unbelievable how dr’s and residents will ogle and discuss in detail all the “bizarre” symptoms as if the PERSON they are discussing isn’t even there. As an adult I look back at that as one of the biggest medical fails of my convoluted medical history. Being subjected to it repeatedly over a lifetime? Mega-fail for medical personnel!
Also, I wonder how the heck dr’s can say “Oh, you’ll manage!”. It is such a clear dismissal of patient and caregiver concerns. What the dr. is basically saying is “I don’t want to hear about how hard this is going to be for you”. You’re right, you’ve not fallen into a tiny crack, but a gaping chasm.
I feel your anger, frustration, and depression over all of this.
“Oh you’ll manage” is the grown-up version of “eat those disgusting vegetables, there are starving kids in Africa.”
I think there’s an unsaid second part of that – why are you such whiners? Others have it much worse than you!
I got that when I was in a psych ward. I was miserable, but I “only” had depression. This other girl had it much worse than me, but she didn’t throw “pity parties.” (We know the other girl quite well – yes, she has had a hard life but she’s also smart and knows how to work people.)
And you don’t have a choice. You have to manage. The pain won’t kill me, I just have to “manage” until I fall asleep or the meds kick in. I wonder if it’s the same people who say, “I’d kill myself if I were in your spot” who also say things like “Oh, you’ll manage.” Because, after all, you have said that you manage with everything, what’s one more thing? Stop kvetching! /bad attempt at sarcasm.
Mel, anna, everyone who runs the site – I appreciate a safe spot where no one’s going to say, “She’s just doing this for attention, she’s lying.” Where the myriad diseases and disabilities that people have aren’t belittled and I can’t imagine the grody messages you have to read to keep it safe.
“You’ll manage” reality: sometimes “managing” is almost if not downright impossible.
“You’ll manage” fantasy: “managing” is *destined*.
Oh, I’m sorry you guys are going through this…I had thyroid cancer and I decided not to do the radioiodine thing (it was caught soon enough that it would have been more of a “just in case” measure) because it would have been too much hassle for two able-bodied people to deal with if we didn’t absolutely have to. At least it’s not as hard on the system as standard radiation therapy.
I’m so sorry you have to deal with this crap. One would think doctors and hospitals of all places would have better knowledge of disability, but the fail just keeps piling up.
“You’ll manage” = “you’ll be lost to followup and we won’t have to think about you.” I wish I could say I was surprised at the rank insensitivity you describe here, but I’m not. I’m so sorry you have to have that kind of crap added to what you’re already going through.
And really, have they never given radioactive iodine treatments to someone who needs daily assistance with ADLs before? That seems incredible to me, considering how many cancer patients are of advanced age and that home care assistance is extremely common in that population. They really ought not to be treating Don’s case like it’s a one-in-a-billion fluke, because it’s anything but. (But of course, even if it was a one-in-a-billion fluke, that would still be no excuse for them being so dismissive about it.)
Damn.
Oh yeah, you have my sympathy. I get to be a freak-show, too. Ehlers-Danlos Syndrome. Hey, Don and I practically have collagen-cousins!
I’ve gotten used to the various doctors oggling me and asking about all kinds of symptoms that aren’t relevant to what I’m seeing them for. I’ve also gotten QUITE used to snatching my hands out of reach when people go for them. I did manage to startle a doctor once pretty good with that – she was just going to shake my hand and I ended up with my hands balled up against my chest and giving her a terrible glare…in retrospect, it’s kind of funny. In part because she’s one of the only doctors who has never asked about other symptoms of my disorder without a good reason.
I’m still in the stage where my diagnosis is new enough that I don’t mind telling doctors about the effects, but I do draw the line at showing most of the hypermobility tricks. My joints are trouble enough without me doing that sort of thing and stretching them farther. I only show the elbows, because that’s the most stable joint in my body. (Hah, matter of fact, I had a big episode of this today – I was at my GP, and he had a med student in, who was quite fascinated to actually see someone with EDS. So I talked about it, and how you diagnose it, and why my old GP had missed it, so on. He was very pleasant and started with that thing all of the doctors-in-training should: ‘Do you mind if I ask you some questions and examine you before your regular doctor?’)
And the doctors who talk about me like I’m not there…well, I’ve kept exactly one of them, and that’s because he doesn’t do it often and he’s polite about it. He’ll ask if I mind him showing his resident/med student/etc whatever body part he wants to demonstrate. And, well, he’s a brilliant doc and a positively lovely person to work with.
The others, I’ve fired. I don’t mind being used as an example, but I WILL be treated as a person, damn it.
…I get the curiousity x2, because I have Ehlers-Danlos AND I have a service dog. *facepalm*
I imagine that by adding thyroid cancer, Don has had a similar multiplication of questions, particularly the unnecessary variety.
~Kali
*hugs*
There’s not much else I can say. I wish there weren’t so much fail in the world.