Photograph of a rotary telephone on a tree stump in the woods
Photograph of a beige rotary telephone on a tree stump in the woods. There is moss on some of the stump, and dead leaves on the ground.

I am a member of quite a number of Facebook support groups for my illnesses, particularly ME and POTS. One of the biggest themes I hear from others is a struggle to be heard, understood, believed. I don’t often have that problem, and I think there are a number of reasons for that. One is communication tactics and skills. I know that folks with chronic illness, ME in particular, often suffer from cognitive compromise. I’m doing better than many. But there may be nuggets in here for anyone to apply.

I suspect that others may complain about their symptoms and want sympathy or empathy, and understanding that many outsiders have difficulty with.  I certainly suffer in my everyday life, but it isn’t the focus of my communication with folks are are newer to my situation. Instead, I try to frame things in the most objective way I know how, with support from the emerging science on my illnesses.

Explaining complex diseases that are poorly understood is not something that comes naturally to me as an 11th grade science drop out. But I am good at synthesizing information and re-packaging it. So that’s what I endeavor to do, constantly evolving as my understanding changes, and as science makes new discoveries.

Here’s a theoretical conversational scenario if I’m explaining my health situation to a new-ish friend, or a family member who doesn’t know much about it.:

Myalgic Encephalamyelitis (ME) is sometimes called Chronic Fatigue Syndrome.  I think some doctors have used it as a garbage can diagnosis, when nothing else fits. But it is a distinct disease, with distinct diagnostic criteria. While science is still actively working to understand it, with research centers at places like Cornell University, Stanford University, Harvard, NOVA Southeastern, and the Bateman Horne Center, there are some things that appear to be true.

One, is that our energy production and usage systems are simply not working right. I don’t have the ability to generate energy normally, and I don’t have the ability to use or regenerate energy normally. Every activity I do requires more energy than it does a normal person. One way we understand this is that our bodies switch to using anaerobic energy at thresholds much lower than the normal population. You know how runners switch to using anaerobic energy for a sprint? My body does that from making toast. I had a test done that measure what my anaerobic threshold is from a perspective of heart rate in beats per minute, and it’s 86. For perspective, for an average woman my age, that number would be around 175. In order to prevent overusing energy I don’t have, I’m supposed to stay below that number (actually even lower) as much as possible. That’s why I wear a heart rate monitor all the time. Depending on your hearing, you might hear it in that background sometimes while we’re talking.

Any time I go over my anaerobic threshold for an extended period of time, or too often in the course of a day, I’m at risk of post-exertional malaise (PEM). It’s the distinctive hallmark symptom of ME. It causes me a lot of pain and even more exhaustion than I normally have. It can also make my health deteriorate over time.

There are a lot of other illnesses that often come hand in hand with ME, and I have several of them. One of them is POTS. It’s a disorder of the autonomic nervous system. Basically, my body can’t respond well to gravity. When normal people stand up, the nervous system pushes blood back up through the body – that’s how the brain gets oxygen. My body doesn’t do that correctly. So my heart races to try to help bring the blood back up. It happens every time I stand. I take several medications to try to keep my heart rate down. This is a very tricky complication to my heart rate monitoring and pacing. POTS also does other things to my body, like make it difficult for me to regulate my body temperature. In my case, I tend to be hot when others aren’t. Except for when I’m inappropriately cold. 😉

I also got another fun acronym, called MCAS, for Mast Cell Activation Syndrome. It’s like I’m having an inappropriate allergic response to things in my environment, like chemical scents, or foods I eat, particularly those with histamines in them. I get sinus problems, an elevated heart rate (notice a problem pattern), and IBS if I eat problem foods. Which is most foods I particularly like. So I eat carefully off a low-histamine food list, and I take medications and supplements to reduce the impact of triggers.

ME causes pain, overdoing it and getting PEM causes pain. And for more pain options, I also got Fibromyalgia! I take supplements and prescriptions to try to keep the various pain problems to a manageable level. Some are preventative, some are reactive.

In my experience, explaining the lay of the land to folks with that sort of a starting foundation goes pretty well. People might ask a variety of follow-up questions. I might describe my day-to-day life, share the impacts, tell folks I’m generally housebound, and spend most of my time in bed, use a power chair when I leave. But I’ve started by giving them the fundamentals of why.

Here’s a different kind of approach I might use when talking with a health care professional:

First, I always take a printed, annotated list of medications and supplements to any appointment, in addition to a 2 page handout from ME Action that nicely summarizes the disease. If I think I might need proof of ME for some reason, I take a copy of my 2-day CPET report that explains the testing I’ve had, how they determined my anaerobic threshold, my level of impairment. etc..

In an appointment, I usually have to check in with either a doctor or a nurse about their knowledge of POTS and their knowledge of ME. I usually do that by saying something like:

Are you familiar with POTS? It stands for Postural Orthostatic Tachycardia Syndrome. It’s a disorder of the autonomic nervous system, when my body doesn’t respond well to gravity when I’m upright. My heart races to try to pump blood up through my body, and I have a number of other autonomic irregularities that come with it, like problems with temperature regulation. I do NOT have low blood pressure. I take the following meds to try to keep my heart rate down. If anything, my blood pressure is slightly low. If you get a high reading while I’m here, it’s probably as a result of my Orthostatic Intolerance.

Are you familiar with the current research and understanding of Myalgic Encephalomyelitis? It used to be more commonly referred to as Chronic Fatigue Syndrome, but it is a specific diagnosis with a specific set of criteria. There are many problems with our energy systems, which researchers are currently working to understand. One way we understand this is that my body switches from using aerobic to anaerobic energy at an incredibly low threshold. I was tested to understand mine, and my AT is 86. I have that report with me if you’re interested in all the details. I’m wearing this heart rate monitor (you might hear it buzzing), to try to keep my activity under that threshold as much as possible. But that is very difficult.

I’m generally housebound, and spend most of my time in bed. I will exceed my limit making toast. I need daily help around the house to take care of basic tasks, and I currently need help bathing. It is very difficult for me to come to appointments like this, and my primary care doctor comes to my home. You’ll never get an accurate resting heart rate reading here, because I’m doing too much work to be here. My actual resting heart rate is in the high 50s to low 60s. You’re unlikely to get a number below 80 or 90 while I’m here, and it will take me several hours to recover back to my resting heart rate. Because I am over my AT for much of a couple of hours to be here, it could take me a week or two to recover from this appointment.

So that’s a glimpse into my ramblings; contextual and long has always been my style (including when I was a professional trainer).

If you’re interested in the ME Action handout or how I manage doctor’s appointments, browse over on my Chronic Illness pages.

Are there ways that you approach these conversations that you’ve found particularly helpful?

Communicating About Chronic Illness
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7 thoughts on “Communicating About Chronic Illness

  • September 29, 2019 at 5:45 pm
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    What a great ida to share these dialogues! So many struggle to put into words what they are going through, I’m sure this will help many people. I don’t meet new people anymore since I live in bed now, but I used to explain it in a similar way. Keeping printouts and lists with you for appointments is a great idea too! I should probably put some things together in case I need to see a doctor again sometime. I’ve not been to one since 2017. I’ll be linking back in my weekly news round-up this week. x

    Reply
    • September 29, 2019 at 9:47 pm
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      Thank you! I’m mostly in bed myself, and yet my life has conspired to keep introducing me to new people. Some online, many through friends. I’m glad you found it helpful!

      Reply
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  • September 30, 2019 at 4:11 pm
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    You’ve provided excellent answers to questions that are often asked. I like the way you’ve clearly laid out the consequences of what will happen to you when you’ve exceeded your energy limits. I have ME/CFS as well and a possible POTS diagnosis (still investigating). I am completely unable to regulate my body temperature and can be freezing cold to the touch, while simultaneously be sweating profusely.

    I enjoy reading your posts as they are always so informative. Thanks for sharing this one.

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    • September 30, 2019 at 8:32 pm
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      Thank you so much! Temperature regulation is such a challenge. Agreed.

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  • October 1, 2019 at 2:10 am
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    Ok I did read it right away after all! This is great!!! 😀😀😀 I’m going to re read it before I see a new physio to try and get cervical traction on Wednesday, and bring the handout!! When I am explaining about ME, I like to describe the hallmark being post exertional malaise. So I might say something like, I’m here now getting my haircut and I seem fine, but because I’m using so much energy sitting up in this chair for an hour and processing all these sounds and conversation, tomorrow I will likely be unable to get out of bed and may experience additional symptoms like burning, tingling, pain, extreme vertigo, etc. This post exertional reaction can happen from something as simple as getting dressed, washing my face, and brushing my teeth without rest breaks in between and before I do another activity. I also always tell people how active and athletic I was before, so they understand I’m not just lazy and I didn’t just stop moving. People often ask about treatments, and I tell them there are no approved treatments because it is still unknown what causes the disease, but there is finally starting to be more research to uncover the biological mechanisms. And I tell them there are many studies which have found biological differences between the ME/CFS patients and healthy controls. (I am a biomedical engineering PHD so I do feel comfortable talking science at least a little even when I feel like a total zombie). But most people just want to understand what it feels like and to know the prognosis. And if I try to describe how I feel a lot of the time, I say things like, it feels like I’m a healthy person who pulled two all nighters in a row, and I’m both drunk and hungover without touching a drop of alcohol, and weighed down with lead boots. Things like that.

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    • October 1, 2019 at 12:27 pm
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      Yes! That’s a great explanation of PEM. Good luck with your physio appointment!

      Reply

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