For today’s NHBPM post, I’m talking conversations with doctors.
My first experience with a doctor telling me my pain was all in my head came from a surgeon.
I was 24, still naive and not yet aware of the true nature of the beast that had entangled itself in my nerves. I’d been experiencing extended pain following my ankle twisting adventure and had a few scans taken. Initially, an ultrasound showed damage in the ankle and possibly a ruptured ligament. I was put in a Cam walker and referred to a surgeon.
A few months later, I met him. I was sent to have an MRI on the ankle to get a clearer picture.
A very clear picture, it turned out. A nice, normal picture of a healthy ankle with absolutely nothing going wrong.
A deceiving picture.
I had arrived at the appointment of the reveal, hobbling with a pair of forearm crutches. I could hardly bear any weight on the offending ankle. It didn’t take long for him to deliver his message, laced with condescension and arrogance.
“There’s nothing wrong with your ankle. Why are you on crutches?”
Why, indeed. Why would somebody who can’t step on their ankle without the pain of a thousand burning knives use a pair of crutches?
“You need to see a psychiatrist.”
I guess it’s not that surgeon’s fault that he was tricked by the tools he puts so much faith in, I can understand walking through a job with specialty blinders on. It’s easier to just do what you have to, just learn what you have to and let different specialists learn the rest. It’s easier, but not acceptable when you charge hundreds of dollars for minutes of your time.
The second time I was told that my pain was all in my head came post CRPS diagnosis. We knew what we were dealing with, as much as anybody could in 2007. Well, I knew what I was dealing with as much as I could, it turned out that my pain specialist was far less prone to keeping up with current medical developments.
I only wish that I’d known doctors could get away with perpetuating ignorance before I put my trust in them to help me.
This particular doctor was all about the drugs. All about solving any developments with another pill, add another toxin, that’ll fix it. He did not advise me about the importance of remaining as active as possible. He did not advise me that I could benefit from physical therapy, from actually beginning pain management treatment whilst waiting out the health insurance gap for pre-existing conditions.
He just advised me to wait. Wait for the ketamine. The holy grail of pain management. The ketamine was going to fix me right up, he said. Sometimes it takes a couple of infusions, he said.
A year later, I was finally put on that drip. Needless to say, it did not fix me right up. In short, I went through withdrawal after the infusion and then everything got a whole lot worse in the pain and flaring department. Here is a link to what happened in 3 videos for those that would like more info.
When I returned to see the pain specialist, a month or so later, I could not even walk. I had to be wheeled into his office in a wheelchair. He didn’t take well to this. Apparently, I should have been able to walk and his poor, ignorant mind couldn’t recognise that sometimes “shoulds” and reality don’t exactly match up.
“Why are you in a wheelchair?”
Lots of explaining. Lots of recounting how my body reacted to the infusion and how it had been behaving since then. Lots of telling of the pain spreading through my left leg. Lots of hoping that he had a plan for such instances. Lots of believing that I could not have been the only person to even have such a reaction to a ketamine infusion.
“I don’t have anything else to offer you. CRPS doesn’t spread. I don’t know what’s wrong with you.”
Lots of shock and confusion.
“You need to see a psychiatrist.”
Lots of mind boggling and despair.
I was no blinged out old white guy with a few degrees (he had this thing for smarmy, chunky chain necklaces) but even I knew that there were many documented cases of CRPS spreading and that the notion of it being only regional was outdated.
An old wife once told me that bad things come in threes and for the sake of this story, she was right. That’s not to say these are the only three such experiences that I’ve had with disbelieving doctors that take appointments and payments and offer only blind assumption. These are merely the most distressing instances.
Pain Specialist Prick (PSP) was the proverbial wolf in sheep’s clothing. I was told to be wary of him, warned by my GP, warned by others in the chronic pain community. PSP was not to be messed with, he was a hard edged, straight talking, patient managing machine.
None of this worried me at the time, I had no idea that what they were trying to tell me was that he was a bully. A basic, free range, power tripping bully. I just thought they meant that he knew what he was talking about. Which he did, in the beginning…
Initial consultations were all promising. He was able to explain CRPS with more clarity than any doctors I had seen before him. He was able to explain what is thought to be happening when CRPS spreads. He was able to talk about the link between physical pain and emotions. He was able to comprehend brain fog. He seemed like a sense making saviour.
Under his guidance, I spent several weeks in a rehabilitation hospital. I learned so much. It was there that I first met Feldenkrais, that gorgeous filly whom I chased back into the outside world. It was there that I started to progress positively for the first time. I felt stronger and hopeful and more in control than I had ever been.
The point of pain management rehab is not to just bring patients in for a couple of weeks and then abandon them. The original plan that PSP gave me was a few weeks of inpatient followed by weekly outpatient appointments. I completed the time in hospital and a couple of outpatient days before the entire thing went pear shaped.
I twisted my pelvis. This is not an uncommon occurrence, it’s just a little skeletal tweak that sets me back sometimes. When I’m able to keep active and keep my core strengthened, it happens much less. When it does happen, though, it’s highly incapacitating and I usually need to be lying down until the muscles stop spazzing out and I can start to physically work through the issue.
When it happened on the day that I was due for an outpatient appointment, a whole lot more than my pelvis got twisted. The physiotherapists told me that I needed to book back in to see the doctor so that he could evaluate what I should do next to try to heal my body. That made sense to me, I knew that the twisted pelvis thing was only a temporary setback, but that’s the sort of thing a treating doctor should keep an eye on.
PSP did not see it that way. Apparently, twisting one’s pelvis means that one is simply not trying hard enough. I was actually scolded. Yep, for not getting better. A high earning pain specialist decided the best approach was blame. The same pain specialist that had taught me about how unpredictable the nervous system can be could not comprehend that I could actually be dealing with an additional injury.
Lots of shock and confusion.
He would not allow me to continue working with the pain management team that had been helping me so much (physiotherapists, occupational therapists, counsellors) because, you know, I was just crazy. I was so crazy that he thought it OK to blatantly lie about my program ever having included outpatient sessions. It was an odd thing, that lie, because not only had other people been present when the program was initially discussed, but I had already attended outpatient sessions.
As far as I know, it’s really difficult to attend things that don’t exist.
“You need to see a psychiatrist.”
I would receive no more help from him, or his team, unless I exclusively saw the psychiatrist. Because, you know, stopping all physical treatment is really good advice to give to someone dealing with CRPS and Central Sensitisation (by that time)…except that it’s not.
I did see the psychiatrist, because I still felt a little bit like I had to do what I was told. Oh, so naive. The sessions didn’t help, not in the slightest. That poor psychiatrist didn’t have anything to offer me on account of mental processing wasn’t exactly my biggest problem. Talk therapy isn’t really a thing that works for me, I find it more useful to read and learn positive thinking techniques on my own. Also, writing this blog helps a lot.
Chronic pain has been misunderstood and stigmatised for so long that many people probably don’t know what to believe. Even patients themselves often wonder if they’ve just gone crazy because their symptoms are so utterly illogical.
It’s disgusting that doctors, especially pain specialists, are able to go around perpetuating this rubbish and informally diagnosing people with Hysteria. I suspect it’s simply because they don’t know all the answers and that just makes them plain uncomfortable. I suspect it’s because it’s easier for doctors to force patients into the box of something they’re familiar with rather than approach with honesty and curiosity.
Whatever their reasoning, this arrogant/ignorant behaviour from doctors is not OK. Patient blaming is not OK. Professionally practising a speciality without staying on top of current medical developments is not OK. I feel like we have a broken system here, I just wish I knew how to fix it…
Love & Crazy Eyes,
This post written as a part of National Health Blog Post Month, run by WEGO health. Check out what people have been contributing via #NHBPM on Twitter, or joining the NHBPM Facebook Event.