I never know how to start these things. How about this. My name is Laura and I’m a “difficult” patient. Wait, don’t run away. I’m not a jerk, at least not most of the time. But I’m still considered a difficult patient. Why? It’s complicated.
I’m sitting here watching my husband Aaron acclimate our cat Anya to having her feet touched. This comes out of an “episode” a few weeks ago where Anya, who is a bit of a vicious hell beast (a beautiful vicious hell beast), had an ingrown claw. Her claw had gotten ingrown because she is a vicious hell beast – any attempt to cut her nails must be planned and executed Mission Impossible style – and then you still only can get one claw at a time. I had not been keeping track of which claw I had trimmed recently, I realized this when I noticed that one of her nails had grown full circle around and into her paw pad.
I felt like a very bad pet parent.
[Description: animated gif of brown and black tabby standing on back legs to grab string.]
One rather expensive and nerve wracking vet visit later (we were billed for “nail trim, difficult”), Anya is now freshly manicured, with blunted little pokers instead of the dagger-like claws she’d been sporting for a year or so. Aaron and I have resolved to do better. Toward that end, we are trying to grab Anya and handle her feet regularly. Our hope is that this will allow us to avoid another trip like the last one.
At the last one, after examining Anya (who had spent most of the time crouched, growling, and hissing) the vet tech scooped Anya up in gauntleted arms and carried her in back. A few moments later, the sounds began. These were clearly the sounds of a cat possessed by about 9 demons, channeling the very depths of hell. “That’s our little princess” I said to Aaron. “Nah…that’s not Anya…” he said in disbelief. The vet came back in looking a little sheepish. “Was all that noise her?” I asked. “Yup!” he said, stuffing her back in her cage with visible relief. “Did anyone get hurt?” we asked. “Oh, just a few scratches…” the vet said.
My cat is a difficult patient.
Coincidentally, I am also a difficult patient.
Unlike Anya, I do not bite and scratch and I only rarely ever crouch and hiss at anyone. I am difficult because I have several chronic, complicated health problems. Ever heard of dysautonomia? How about gastroparesis? Hypohidrosis? Hypotension, surely you’ve heard of that. Let’s google it. No, not “hypertension” Google…HYPOtension. Then there’s neurocardiogenic syncope and Ehlers-Danlos Syndrome. Here’s one you’ll know: migraines. Everyone knows what those are, right? Sure! Migraines are like a really bad headache. Sort of. Kinda. Then there’s endometriosis. Er…that’s, uh, like lady stuff, right? Like, you get really bad periods or something?
If you don’t know what most of those things are, and have only a passing familiarity with the rest of them, do not feel bad. You’re not alone. Most medical providers are rather stumped by many of them too. Which makes me difficult. I’m difficult for them to diagnose, difficult for them to treat, impossible to cure (none of these conditions is curable). When I get sick, it’s hard to know which, if any, of my chronic problems is causing the complaint or if it’s something else. And when it is something else, it’s hard for most doctors to know how to diagnose or treat it in the context of all my other crap.
Take my ovary. Please.
[Description: medical illustration of female reproductive organs, showing enlarged left ovary with twisted pedicle and fallopian tube.]
I had an ovarian torsion in February. Actually, I had surgery in February. I had the torsion through most of January, but it went undiagnosed for weeks and then unaddressed for a bit more time. Why the delay? Partly it was me. I thought the right lower quadrant abdominal I had in January was pain was from my crappy joints, which is what you get with my form of the genetic connective tissue disease “Ehlers Danlos Syndrome” (EDS).
But the pain kept coming back, all the things I usually did for my EDS pain didn’t help at all. And the pain was very bad. So I thought, hm, really bad sudden onset RLQ pain? I should call my GI doctor. He saw me a few days later and sent me straight to the ER to rule out appendicitis. They did an ultrasound and found what they thought was an ovarian cyst, so they sent me home, with instructions to take more ibuprofen and follow up with my gynecologist. My gynecologist couldn’t see me right away, but could see the report on my ultrasound. He suggested an even higher dose of ibuprofen-like medication and scheduled me to see him in a few days.
The gynecologist sent me for another ultrasound. The ultrasound office sent me to the big teaching hospital with the special minimally invasive gynecological surgery team that had taken out my uterus 6 years prior, my last ditch effort to stop the pain and debilitation caused by my endometriosis. The ultrasound people were worried about an ovarian torsion.
At the hospital, the very special minimally invasive gynecologist surgery team sent me for another ultrasound, which they canceled as I was being wheeled out and I told them I had just had an ultrasound literally hours before.
They said we don’t see any evidence of an ovarian torsion (I didn’t know that it’s really hard to see on an ultrasound). They said there is a complex cyst and many women don’t even notice the pain from ovarian cysts and your pain seems too severe for an ovarian cyst, but then they said if it was an ovarian torsion, you’d be in a lot of pain. I said “I was in a lot of pain. It comes and goes”. They said That makes it less likely it’s an ovarian torsion (I looked it up afterwards, actually that doesn’t make it less likely). I said “ok then, how about a CT scan if you don’t think this fits with the ovary?” to which they said they would ask the ER attending. They told me later that the ER attending had said no.
They said We think it’s really unlikely to be an ovarian torsion, given that you had a hysterectomy. I said “But I have a connective tissue disease…would that affect this?”
They said ¯\_(ツ)_/¯
I said “It’s spelled E-H-L-E-R-S dash D-A-N-L-O-S….”
They said ¯\_(ツ)_/¯
They said we can do surgery right now, if you WANT, just to rule out an ovarian torsion. If you WANT. I said “I don’t really WANT to have surgery if you don’t think that’s what it is…Who would WANT pelvic surgery?” and “I have all these other medical things that make surgery really difficult.” They said You know, the worst that would happen if it IS an ovarian torsion is that the ovary will die, and then the pain will stop. They said If it’s just the cyst, the pain will eventually resolve as it’s reabsorbed.
And I said “I guess I could go home with this prescription for heavy pain meds you gave me, and see if I can ride it out, but if it gets worse, I would like to come back and have the surgery. I can’t take this pain med long term, it will kill my bowel and make my gastroparesis worse” and they said Yes, definitely, come back if it changes or gets worse.
It. Got. So. Much. Worse.
[Description: black and white photo of Mia Farrow in Rosemary’s Baby, clutching her pregnant belly and looking horrified.]
I went back. They said most of the same things, except this time there was no offer for surgery. I asked about it and the very young doctor in her adorable slouchy sweater sat down next to my bed and leaned on the railings like she was posing for her yearbook picture. She said This sort of thing really doesn’t warrant emergency surgery. It’s more appropriate for you to contact your gynecologist outpatient, and then he can decide if he wants to refer you back here for surgery. I said “you realize what you’re suggesting, that process, it could take weeks, right? I can’t do another day of this pain, let alone weeks.” She stood up, shrugged her shoulders, and made a frowny face that I’m guessing she thought looked sympathetic.
I had surgery a day later after calling my gynecologist, who was furious at what had happened over the weekend in the ER. I had no prep. Everything was a rush. Everything was now or never. No one would talk to my GI doctor, my gynecologist had his hands full just getting the surgeons to consider surgery for me after they had convinced themselves it wasn’t needed because it couldn’t be an ovarian torsion and even in the unlikely case that it was, no biggie, it’ll just die and then I’ll feel better (if I didn’t get peritonitis or bleed to death). When I asked for pre-operative hydration, my surgeon was reluctant to order it, despite claiming to know what dysautonomia was. The nurse in the pre-op area was quite shirty with me and my husband when we got there, perhaps annoyed that I was a late add on, or annoyed that I was there so early to get IV fluids, or annoyed that I was a horrible stick (because after days of barely being able to eat because of the pain and then puking up much of what I did manage to get down, I was dehydrated and my veins were like flat ribbons), annoyed that I was a difficult patient.
Post-op, I developed gastritis from all the non-narcotic pain meds. The narcotic pain meds I took peri-operatively and the general anesthetic slowed my gut down pretty good, so I couldn’t really eat much. It was hard to stay hydrated. I had had 4 pelvic surgeries in the prior 14 years and none of them, including the hysterectomy, had left me feeling that bad. It’s June. I still feel much worse than I did pre-operatively. I’ve lost a lot of ground with my ongoing, chronic health issues.
The ovarian torsion was not the first time my medical complexity resulted in a Keystone Cops-esque medical caper. It probably won’t be the last. In the past, when this has happened, I have sifted through everything I did and said, or failed to do or say, and I try to figure out what I did wrong, and how I will do better the next time. I used to really take on a lot of responsibility for this, assuming that because I was invalidated and ignored, and sometimes treated with outright hostility, it was because I was somehow acting like Anya, like an actual difficult patient. But with the ovarian torsion, I am quite certain that I did not hiss or growl or bite or scratch, or do any of the human equivalent. I was polite, I was respectful, I was firm when I felt I needed to be. I asked questions, I restated and reasked if my question wasn’t answered, I stated my needs and preferences and tried to be clear which was which and why, I brought lists of my meds, I brought lists of my other doctors who follow me for my other health problems who they could call and talk to (they didn’t), I tried not to overwhelm my providers with info but also not withhold things that were important. I did all this in increasing pain, fear, and frustration. I did everything they tell you to do in all those articles and blog posts where difficult patients are advised on how to be less difficult. And you know what? I was still a difficult patient.
I’m realizing that for many people in medicine, both patients and providers, there is tendency to conflate “difficult” and “complex”. The two are distinct. We need stop using “difficult” as a euphemism for vicious hell-beast, and find better ways to express difficult due to complexity (but otherwise neutral to nice) vs. difficult due to being a vicious hell beast. Does it make a difference? It feels like it does to me, but what do you think?
[Description: woman in hospital bed wearing dark sunglasses]