When I have an appointment with a new medical professional, I dread the part of the visit when I will have to talk about my chronic fatigue syndrome. Even if the first part of the visit is filled with compassion and signs that my narrative is being followed, understood, and believed, the part where I mention my chronic fatigue and its severity nearly always transforms the conversation into something unpleasant. Most commonly, what I say about my most debilitating symptom gets ignored, and the healthcare worker quickly changes the subject. Other times, the person will dismiss what I’ve said, by telling me that it can’t possibly be as bad as I say, by telling me that “everyone gets tired sometimes,” or by telling me that my fatigue is likely psychosomatic- just a symptom of depression.
It is tempting, in the face of this kind of dismissal, to start doubting myself, and to start doubting that what I think my body is experiencing is real. This kind of doubt is incredibly destructive. If I stop listening to the signals my body is sending me, or start thinking that I can’t be trusted to interpret these signals, I do more activities than my body is up to, and do less medicating and frequent resting than my body needs. My body, like that of many others with chronic fatigue, cannot withstand this kind of treatment for long, though, and soon then the fatigue signals become too strong to be ignored. Dizziness, shakiness, flu-like body aches, racing pulse, nausea, and blinding migraine pain eventually descend. This kind of overdoing it then puts me out of commission, and I’m bed-bound for periods which last at a minimum 20 minutes, and have so far gone on for as long as 6 months.
Thank goodness for the internet. Now I know just how common, debilitating, and misunderstood chronic fatigue is. Now I know I am far from alone in having healthcare workers who don’t understand or believe what I’m up against. Now I know that it is important to work with my healthcare team to get them to start taking my fatigue seriously. Excitingly, now I know some tricks which have helped me convince my healthcare team that my fatigue is as I describe it. I have had the immense satisfaction of watching it really sink in for a healthcare worker that I am up against immense, real and debilitating fatigue, and that my complaints need to be taken seriously. I am writing to share some of my tricks, in hopes that other patients can use them to help educate their own healthcare teams.
Before I share my methods, I wanted to share a little bit of history which has given me validation about my experience with healthcare workers and their mishandling of my chronic illness. This history has inspired me to hope that it won’t be long before the eradication of the medical community’s ignorance surrounding chronic fatigue syndrome. I hope this is inspiring for you, too:
At the beginning of the 20th century asthma was seen as a psychosomatic disease – an approach that probably undermined any medical breakthroughs at the time. During the 1930s to 1950s, asthma was known as one of the holy seven psychosomatic illnesses.
Asthma was described as psychological, with treatment often involving, as its primary component, psychoanalysis and other ‘talking cures’. A child’s wheeze was seen as a suppressed cry for his or her mother. Psychoanalysts thought that patients with asthma should be treated for depression. This psychiatric theory was eventually refuted and asthma became known as a physical condition.
Asthma, as an inflammatory disease, was not really recognized until the 1960s when anti-inflammatory medications started being used.
Some of these won’t be for you, but I hope at least strategy one can help you!
-Define boundaries for yourself, and keep updating them. Since these days I usually have just enough energy for two medical appointments in a day, or enough energy for an appointment plus a dinner with friends, I make my plans accordingly. When a curveball is introduced into my day’s plans, though, it throws everything off. Last week, there were two days when I had two appointments. Each of those days, I was made to wait in a waiting room for 75 minutes past my scheduled appointment time. This has happened before, and will happen again, because some medical practices never run smoothly, and because even well-run practices encounter emergencies which put them behind schedule. Since that kind of wait time uses up my precious “up time,” it usually means I have to cancel the rest of my plans for the day. I have recently given myself permission to leave after 60 minutes of waiting, even if I’m not in active distress. Enforcing this boundary (usually I leave after 75 minutes) has been a huge breath of fresh air for me; with few exceptions, I have stopped having my entire day ruined by this kind of unexpected wait. When I’ve enforced this boundary, my trip home has been safer, my other plans haven’t needed to get canceled, and my medical teams have had the chance to see the kinds of compromises I have to make every day thanks to my fatigue.
-Enforce your boundaries when you can, and, when you can muster it, communicate while you’re doing this. I’ve recently had good luck writing brief notes each time I’ve had to excuse myself because I have been made to wait for more than an hour. Each time I left an appointment last week, I gave the receptionist a note INSERTlike this one, and headed out. Both times, I then received an earnest voicemail from the doctor himself, with apologies and promises to not let that kind of wait happen again. When I went back for a rescheduled appointment today, the receptionist apologized and asked me to let her know if I am ever close to having to leave again. This has been an incredibly satisfying and relieving experience. Things won’t always go this well when I assert myself, I know, but I know it’s never my fault if my stated boundaries aren’t respected, and it feels good to be standing up for myself and my needs.
-When you’re feeling particularly misunderstood, write a polite but strong letter. I wrote a blog post about doing this, and my post includes the letter I wrote which inspired an entire medical practice to start taking my fatigue seriously. Another blogger has posted a letter like this, and hers includes some great citations to current medical literature to back up the fatigue-related claims her doctor was dismissing.
-Talk openly and frequently about your fatigue. Sometimes before a medical worker will understand your fatigue and the impact it has on you, you have to spend multiple visits repeating yourself and finding different ways to convey the same info. I have had the satisfaction of learning that with a good and well-intentioned listener, this kind of repetition can sometimes help things click for them. This happened for me with my primary care doctor. When she finally realized how much she’d been dismissing my fatigue as a secondary complaint, my doctor apologized profusely, and promised to try to be a better listener for me and for her other patients.
-Try to be polite or matter-of-fact when things aren’t going well. Try to control the desire to throttle someone or even to chew someone out, even while you’re being firm about what you will and won’t put up with. Read this article about asserting yourself, and know that it gets easier with practice, especially if you have successes along the way.
-Bring someone with you, especially to difficult appointments. Bringing in a reliable witness or patient advocate can help you to be believed, to get your story across even if you yourself are too fatigued or otherwise having trouble telling it, and it can just be nice to boost your morale. I previously wrote a post about how effective it can be to bring my partner with me when he’s able to accompany me.
-If you have a medical professional who gets it, see if they’ll help talk to the professional who doesn’t. It can be amazing how far the word of a doctor who knows and trusts you will get you.
-Make friends with support staff. On good days, if you have them, try to learn the names of your team members. Be friendly, and always try to show gratitude for the work they do. This can make your visits much more pleasant, but also can build strong alliances you can use to get the care and understanding you deserve. When you nicely explain your limitations to support staff friends, they will often try to see if they or your doctor can accommodate you better.
Preparing for Appointments
-Build up an understanding that you are a reliable and organized patient. If you can bring in official records about your conditions (or diaries for self-reported conditions), you can help demonstrate that your accounts are reliable.
-Bring in brief handouts. Some clinicians can be impressed by and learn from information you bring in, as long as you can demonstrate that it comes from a reliable source. Consider whether having studies to cite or bringing printouts of relevant information might help get you and your healthcare workers on same page.
-Bring in a list of the concerns you hope to discuss at your appointment. I wrote a post about how to do this and why. If you show you are prepared and know what you want out of the appointment, you will be more likely to have a chance to talk about what is important to you, including your fatigue.
Between-Visit Soul Searching and Self Care
-Try to muster patience for as long as it helps you obtain the support you require. Being a patient sometimes means accepting the good parts of our care along with the less good. Sometimes, this means working with people you don’t particularly like, or who sometimes treat you disrespectfully. If you have patience, this can give your healthcare team the chance to learn to trust you, and to learn how to improve your care. That said, do listen to yourself. It is healthy to recognize your limits and to remove yourself from situations that feel on the whole disrespectful or unhealthy.
-Find support. If you are having trouble being heard by your healthcare team, it can help to find supportive friends/family/therapists/health professionals/online communities to vent to. This can help you feel heard and understood, even when it can’t be by parts of your healthcare team.
-If you have options, keep yourself open to the idea of changing where you seek healthcare. Not all healthcare providers have the capacity to grasp what you’re up against, or to help you. At some points, your best strategy will be to start working with someone new.