85% of clinicians view CFS as a wholly or partially psychiatric disorder; and hundreds of thousands of patients cannot find a single knowledgeable and sympathetic physician to take care of them. Patients believe that the name CFS has contributed to health care providers as well as the general public having negative attitudes toward them.
–DePaul Psychology Professor Leonard Jason
Three months ago, I found a Pain Rehabilitation program which would accept me, was right around the corner from my house, and had a great reputation. Best of all, they had a team of medical professionals who unanimously believed they could bring me close to a full recovery of all my pre-illness function, through one intensive 6-week program. I was in heaven. The promises they were making sounded too good to be true, but I double- and triple-checked, and they assured me they understood my case, had treated many cases like mine, and that they really could make me better. For the first time in a long time, I reconnected with hopes of eventually returning to a full-time job and other “normal” aspects of being a thirty-something.
I’m glad that I had that fresh boost of hope; I’m not sure how I would have gotten through this long winter without it. Unfortunately, though, the promises made by the pain team were as unrealistic as they sounded. At least for now, pain management techniques alone aren’t going to bring my function back. These techniques don’t address my fatigue, which has always been my most debilitating symptom, and in fact these techniques often make fatigue worse.
Multiple times at every single intake appointment, I reminded the pain team that fatigue, not pain, is my biggest nemesis. I thought they heard me, saw me, and were making educated projections about my future. However, I would learn in time that they hadn’t written down my Chronic Fatigue Syndrome diagnosis, or even noted that fatigue is a problem I battle.
When my Pain Rehab program started up, I threw everything I had into it. Over the first four weeks, I learned a lot, got to meet some good people who also endure high pain on a daily basis, and I became slightly more physically fit. However, I spent nearly all of my time outside of the class confined to bed, with hugely elevated fatigue. It was a major loss of function for me.
When I had a progress check with my occupational therapist, she started raving about how much progress I’d made, and lecturing me about how I never get out of my house to have fun. The more I brought up my fatigue, the more she started to blame my fatigue on my “poor life choices.”
I came home from this interview feeling deeply misunderstood, and after a couple hours of falling apart, I wrote to her:
“Basically, though I think I have made great progress in learning and applying the principles taught in this program, throughout this month I’ve been at an all-time low for physical ability and at an all-time high for pain. It made me uneasy to hear you say that I’ve made progress in all areas, after I reported that my ability to socialize, my pain level, my resting pulse, and my activity level have all worsened considerably in the past month.
Also, it seemed like I didn’t get my point across that it’s debilitating fatigue from my CFS, not my pain, which causes me to cancel plans. Most of the time, I experience this fatigue not because of poor pacing, or poor self-care, but just because of my illness. The fatigue is unpredictable, and comes on quite suddenly. It can happen if I’ve overdone it, underdone it, or sometimes it comes on when I’ve been doing everything right. It is my fatigue -not my pain- that is keeping me from having 100% medical appointment and social appointment attendance.”
When I returned to the pain program after my letter had had a chance to circulate, everything had changed. The team had all clearly read the letter, and educated themselves on a very basic level about CFS. They informed me that my fatigue had somehow never made it into my medical record there, and they started some earnest attempts to strike a balance of treating my pain without worsening my fatigue. I can’t say that my function returned, but having my team finally get it did wonders for my mental health.
Some healthcare providers can’t ever seem to understand the complaints of their CFS patients, no matter how articulate and persistent we are. Some, like my pain team and even my primary care doctor, just take time to catch on. So far, I haven’t figured out a sure way of telling whether my debilitating fatigue is being understood by new doctors.
A strategy I’m considering for future interactions with health professionals is asking them questions to test for understanding. After telling them my symptoms, I might ask something like “Would you mind repeating back to me which of my symptoms is most responsible for my loss of function?” or “How will the treatments you’re suggesting help or exacerbate my chronic fatigue?” I’d love to hear your feedback on this: Have any of you tried something like this with your doctors, and if so, how has it worked?
Further reading on this topic:
- Learn more about Chronic Fatigue Syndrome here. “I could not think straight. I had days where I couldn’t spell my name. And such complete exhaustion you can’t describe it, like you just ran a marathon, are hungover, and have the flu, all at once.”
- More on my experience of fatigue.
- Another bad experience I had with doctors not hearing my accounts of fatigue.
- A documentary-to-be, which will hopefully go a long way in educating the general public about CFS.
7 thoughts on “How Can Patients with Chronic Fatigue Syndrome Make Sure Our Doctors Understand Our Condition?”
Wow. Wow! You wrote them a letter AND IT WORKED. That’s really fantastic news. I’m sorry that you had to write the letter, and I’m sorry that this is not the last time, but it’s great that you were heard.
I don’t have experience with asking comprehension questions of doctors like you describe, but it seems like a good idea from here.
Thanks Vika! I appreciate you framing it like that. It’s easy to focus on how difficult it is to get the point across, instead of delighting in the victories, when the point has gotten across and it makes a difference. It is really gratifying to be understood, and believed. Even better would be successful treatment, but I know there aren’t that many treatments for CFS/ME yet.
I’m pretty sure that you and I are living parallel lives! I just wrote about this not too long ago in “It’s autoimmune related fatigue, people!” (http://asmybodyattacksitself.com/its-autoimmune-related-fatigue-people/) and the post right after that (http://asmybodyattacksitself.com/trying-to-preemptively-satisfy-insurance-is-no-the-best-way-to-go-about-health-care/). It’s so frustrating when they get tunnel vision and don’t hear what it is you’re actually saying! And it’s soooooo frustrating that the very specialists that deal with these diseases seem to fail to understand that the fatigue is one of the very worst parts about it!
Thanks Kelly! In my past two appointments, I’ve been told that a scabby allergic reaction to adhesive on my skin is “just adhesive,” and that I’m two inches shorter than I am in reality. That measurement came from the nurse pressing my head hard until it turned sideways, and not listening to my protests because “shrinking is normal as we age” (yes, but at age 31??). I’m glad to commiserate about the systematic silencing of patients, but I wish we could do more than commiserate. Yes, when you write I’m always surprised by how much the posts resonate with what I’m experiencing and/or blogging about. Re: your private message, it was my first private message and a good trial run; it made me discover I hadn’t included a place for your email address. Please try again, or send a message to email@example.com. Thanks for reading, and good luck with your own struggle and blogging!
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I always put my complaints (physical and otherwise) in a fax. I have a copy. They know I have a copy. They can’t say they didn’t get it or it didn’t get in the chart. The fax BEcomes part of the chart. I wrote a book and encourage my doctors to read it. A few actually have!! Muddling Through MS – 40 years of doing it my way. That’s the title. Fatigue is the subtitle 😉