Challenges I’ve Faced in Health Care as a Person with ME

by Kate Singleton

Speech I gave on May 12, 2018, at the Washington, DC Millions Missing Rally, with a few details added.

Hello. Today I’m going to talk a bit about challenges I face as a person with ME [myalgic encephalomyelitis, also known as chronic fatigue syndrome or ME/CFS] in the U.S. healthcare system.

We people with ME have been waiting for so long for the health care system to do better for us. Many of us have been made sicker or traumatized by the healthcare system. And we still need to go back to it for more care, for better treatments, and hopefully someday for a cure.

Prior to my ME diagnosis, I worked in healthcare for a decade as a healthcare social worker. I was a hospital trauma social worker, a case manager at a clinic for people with HIV/AIDS, and an addictions counselor in a hospital’s outpatient treatment program. I also taught patients and providers about passions of mine, health literacy and improving healthcare communication, as a consultant. I’m particularly proud of some publications I created for teaching about health literacy and health care in adult education, the Virginia Adult ESOL Health Literacy Toolkit and Pictures Stories for Adult ESL Health Literacy. I wrote the Toolkit from my bed after developing ME.

I loved my work in health care and all the good intentions, compassion and commitment of my colleagues. Great caring things happened every day in all those settings. But I noticed over and over again, the healthcare system itself is not in good health. We are at a time when long-accepted aspects of the U.S. healthcare system are coming into question from patients and providers alike. Overwork and healthcare provider burnout are increasing rapidly. Financial factors and special interests impact medical decisions and treatments in ways they just shouldn’t. Time spent with patients is shrinking. Costs of treatments and insurance coverage are out of control. What insurance actually covers is decreasing quickly. And patients and their families are being stretched to their limits navigating it all, advocating for themselves, and paying for care.

When thinking about us people with ME and the healthcare system, I want to ask you to believe in the possibility of positive change, and your own power in creating that. I ask you to go into healthcare encounters seeing the candle of light inside yourself that you bring to every situation, no matter how sick you are. It is not acceptable to let the world snuff out your candle. Do not let ignorance and invalidation from healthcare providers blow out your light. Instead, I ask you to realize that by sharing your ME story unapologetically, by educating others, and by persistently calling for better care for people with ME, you are shining a light on the shortcomings of the healthcare system that need to be fixed for everyone’s benefit. Maybe it takes an illness as extreme and complex as ours to do that. You are helping everybody. Keep shining your light.

Now a little about my ME story. I first crashed with ME in 2011. I was driving my 6 year old home from a birthday party when I started to rapidly lose physical and mental energy and experience a host of neurological symptoms. It was terrifying. We made it home somehow. I could barely move, speak, or tolerate any movement, sound or light for weeks.

I realize now an ME miracle occurred in the form of my getting an appointment with a dysautonomia and ME/CFS specialist for 3 months after my crash. How amazing that was to have a specialist close to my home and able to see me so quickly, though 3 months felt like eternity at the time. I got diagnosed with ME/CFS, joint hypermobility syndrome, and dysautonomia. What a relief and a gift that I was able to put names so quickly to these things that were happening to my body. I now know that most people with ME/CFS never get to see a doctor who actually has any level of specialization in their illness. I also now know that getting a diagnosis usually takes people much longer than it took me. I am going to keep shining my light in whatever ways I can for them as well as for myself.

Fast forward to 2017, a very challenging health year in which I added an MCAS (Mast Cell Activation Syndrome) diagnosis to my list. That has put so much more complexity into how I manage symptoms and get through every day.

After I got sick with ME, I started to wonder if my health literacy work was behind me. Health literacy work is all about empowering people to access and navigate healthcare effectively, understand their health conditions and treatment options, and advocate for what they need. Now I realize that being a person with ME in the United States, I’m doing high level health literacy work all the time. I have become my own case manager, advocate, and condition researcher. I educate doctors, nurses, techs, pharmacists, and insurance companies on my condition regularly. I have had to patiently go to battle with insurance companies to get the most basic appropriate care for my condition covered. Does this all sound familiar?

As a hospital social worker I worked with people facing all kinds of difficult diagnoses, but it’s different for ME. The fact is, because the illness and co-occurring disorders are so complex, so poorly understood, so stigmatized, and not taught in medical schools or other healthcare training, there is an extraordinary extra workload put on the shoulders of people with ME — — people who are working with severe brain fog and other neurological challenges, with severely limited mental and physical energy. In spite of all those symptom challenges, I would say that the people I know with ME are often the most highly health literate people I’ve ever come across because they have had to read and digest research on the condition for themselves and educate the healthcare system at all levels about their illness and what might help or hurt it. It’s madness that the system expects this of people this sick.

Here is a sampling of the personal challenges I face in healthcare, and probably many of you do, too.

Common language. Most health care providers and I do not have a common language for what I experience in ME. They are not knowledgeable about ME, didn’t learn about it in school, and don’t get continuing education on it. They don’t know that it affects multiple body systems. They don’t know about commonly co-occurring disorders for ME, such as POTS, or EDS, or MCAS. They don’t know how to interpret my test results appropriately in view of my illness, or what the appropriate tests even are to administer to people with ME. I was reminded of all this to extremes in my 2 ER visits last year at the onset of what I would later confirm were pancreatitis and MCAS symptoms. In these visits I tried to educate ER doctors that even slightly elevated lab results that they would normally consider “clinically insignificant” can be quite significant for people with ME.

ER doctors and others are also sometimes freaked out by how much detail I can go into to describe how my body feels. They have likely also been exposed to plenty of rumors from educators and peers about ME being psychosomatic or a fluff diagnosis. I have often wondered, during those ER visits would I would have been offered a psych referral for my detailed descriptions of symptoms that ER tests couldn’t capture if I hadn’t previously worked there as a respected trauma social worker with the very doctors who were treating me? It’s possible, as anyone with ME who’s been to an ER knows.

Sometimes it’s a wonder people with ME and healthcare providers can communicate at all. We need to keep shining our light on how unacceptable this all is. We need to keep getting healthcare providers to talk about it in spite of their ME knowledge deficits.

Another challenge: I don’t have a primary care doctor. I know I am not alone in this among ME patients. I’ve tried several practices out since developing ME, but each time their lack of understanding of my ME has been truly unsafe for my health.

This past week I needed a medicine for something not directly ME-related. I tried one more local primary care practice. The provider, a physician assistant, listened well and respectfully. She had never heard of ME. CFS yes, ME no. She asked me way too many questions to determine if my ME doctor was legitimate. Had he studied the right things? How did he become an ME specialist? Had he had me tested enough to rule out everything else before giving me an ME diagnosis? It is exhausting to have to answer all those questions once again about the one doctor I see who has actually taken the initiative to learn about ME/CFS, how to recognize it, and what might help relieve its symptoms. I can appreciate that within the parameters of her training, she was doing her best for me in the 15 minutes allotted. I’ll be honest, I was frustrated and wanted to end the appointment quickly and go home. But I decided to patiently shine my light where I could and educate her gently on things she didn’t know about people with ME seeking healthcare. She seemed to take it thoughtfully and thanked me for telling her about Unrest and my ME doc. We’ll see what happens in future.

Another challenge: Medication sensitivity. I am one of the subset of people with ME who is extremely sensitive to many rx meds. Therapeutic doses are generally out of my reach. So what does a healthcare system like ours that focuses on prescription writing have to offer a med-sensitive person like me?

Some doctors have been terrified, annoyed, or blaming in regard to my sensitivity. Starting new meds with them has been a dangerous, sometimes traumatic, rushed experiment.

A few doctors in my past and present, on the other hand, have been incredibly kind and allowed me to call them or email them sometimes daily with reports and questions on side effects as I try a new drug. Sometimes we have been able to find that sweet enough spot where I can derive a little benefit from a drug for a little while without being disabled by the side effects. It has always been thanks to incredible patience, creativity, and calm encouragement from my docs. These docs have been rare and wonderful gems for me. Every chance I get I shine my light on how good they are at working with patients like me. We need many more like them graduating from medical schools.

As a person with strong sensitivity to meds, when I read about research for cures and treatments I get a bit concerned. If the next great things for ME treatment are prescription drugs, what happens to people like me who are not good at metabolizing meds? I’m genuinely happy for the people with ME I read about who have gotten some of their functioning back with a cocktail of medications, and I also feel a little sad for myself that that option is unlikely to ever work for me. Heaven knows I’ve tried. It is indeed a challenge being a drug-sensitive person with ME in a drug-focused healthcare system. It would be great if we could shine more of our collective light on this issue.

Which leads to another challenge I have: Walking the line between mainstream and alternative treatments. Of course we don’t have good statistics on this, because we don’t have good statistics on much of anything to do with ME, but we do know anecdotally that many people with ME, and many people with other complex illnesses, partake of allopathic and alternative healing practices at the same time for symptom relief. When there aren’t many options available, or when the available options are financially out of reach or too hard for your body to tolerate, that happens. And, like allopathic medicines, some alternative treatments help some people. And some of the alternative providers have a strong empathy for people living with complex chronic illness. Once again, it is an area where there seems to be no common language for me to talk with medical providers about what I try and how it’s going. Some medical providers I have seen categorically reject anything non-medical, or see it all as too risky because it’s not evidence-based in a way that they have been taught to see evidence. I appreciate that, but black-and-white, inside-the-box thinking is not always helpful for patients with few if any medical treatment options and financial resources.

And here’s one more healthcare challenge: The exhaustion of just plain going to the doctor and getting tests. When I go to my 4 ME doctor visits a year, I know it will be energy well spent, even though his office is now further away and the trip is a long one for me. I will learn things that will help move me forward in some way, and I will be listened to and believed. I still crash afterwards. But other doctor visits much closer to home tend to be more stressful and tiring for me. And then there are the lights, the sounds, the noise, the smells — — the sensory overload of healthcare settings. I have reduced the number of tests I get in recent years. Nowadays it’s just too exhausting, expensive, and so often the results are inconclusive. My ME doctor and I discuss the risks and benefits of getting each new test in my current situation. This kind of decision-making is part of being health literate with ME.

One thing I have struggled with in opening my mouth to shine my light in ME-ignorant healthcare situations is how to not sound so angry or frustrated that I turn off the other person’s ears. These days I try to find a calm and quiet place inside of me and speak from there. I focus myself on the fact that the person I’m speaking with likely cares and has the best of intentions in a broken care system. And I set my intention to say something helpful and positive, even if there’s plenty of reason for overt frustration. For me that helps.

Thank you for listening. I ask you all to have confidence in that light that stays on in you even in the darkness that ME can sometimes bring. Let’s all continue to use our voices and our power in what ways we can to help bring about a better future for ME patients in our healthcare system.