Here on the blog, I feature interviews with an expert on how to write about a character with a chronic illness or disability that they struggle with. See a list of all the interviews here! While I still recommend getting a sensitivity reader for your work, use these posts to consider how you can accurately portray disabled characters. Today’s feature is Postural Orthostatic Tachycardia Syndrome (POTS) with Rebekah Gwaltney. Shout out to Rebekah for taking the time to answer my questions!
1. Could you describe your symptoms and the experience of discovering them?
I have several concurrent disabilities that often overlap or play off each other, but my major diagnosis that I will be talking about here is Postural Orthostatic Tachycardia Syndrome (POTS) with Vaso-Vagal Syncope. I also have PTSD, Fibromyalgia, and Generalized Hypermobility Syndrome (G-HMS).
POTS is an extremely misunderstood and complicated syndrome that involves an extremely diverse potential for symptoms and severities. The short explanation is that it is a syndrome that affects the nervous system, in that the body does not proper self-regulate. Where abled bodies naturally adapt seamlessly to changes in posture, atmosphere, activity level, or even air pressure, POTS bodies do not do this well. We have to maintain our own equilibrium manually.
I experience chronic low blood pressure and fainting when stressed either physically or emotionally. I have brain fog, or difficulty thinking clearly, because of the difficulty getting blood to my brain. Moving from laying down to sitting or sitting to standing can be very painful and cause headaches and/or fainting. I am fatigued very easily despite being very physically fit from ongoing physical therapy (a person with POTS can’t ever stop physical therapy because our bodies decondition rapidly). I have palpitations commonly and my heartrate will spike above 110 at the drop of a hat, causing all my other symptoms to spike as I feel as though I am running a marathon while standing still, sitting, or lying down.
There are many, many other potential symptoms to POTS which I sometimes experience, including shaking or weakness in the limbs, a lack of sweating (which leads to intolerance of heat), insomnia or sleep disturbances, blured vision, poor night vision, and nausea. Some people with POTS have chronic high blood pressure instead of low blood pressure, but that is more rare. All this and more can happen with POTS, as the underlying issue is a fundamental inability for the body to regulate its systems, which is why POTS is such a strance and difficult diagnosis to wrap one’s head around.
2. What are some of your biggest frustrations living with this condition?
I am extremely fit, but I can’t tolerate prolonged exercise. I love to run and to swim and I love spending time with my dogs, but sometimes I can barely stand for more than five minutes.
But the most frustrating thing is that I feel like my potential has been stolen from me. I am smart, hardworking, and strong, but most of my day is spent managing my POTS and other disagnosis. I am in constant pain, often exhausted, and never capable of doing all that I want in a day. On a good day, I have about three to four hours of actual, functional time to do anything in. I have to choose whether that’s to write, to care for my animals, to spend with with family or friends, to clean or feed myself, to clean the house…. I can’t do what I want.
I have to rest. A lot. But not too much and not in the wrong way, or else I will make myself worse and sicker.
3. Does anything help you feel better or make life with this condition easier?
The single most important thing for my condition is medical support, obviously. Medication helps with my heart rate and my blood pressure, keeping me from chronically stressing my circulatory system and helping with a lot of the constant symptoms. It can also help with symptom flares, pain medication to keep me sane during 12-36 hour periods of extreme pain.
The second most important thing is physical therapy. In a very informed and educated way, it’s important to exercise every day without going too far, to keep my body healthy and tolerant of physical activity to the best of its abilities. It’s still nowhere near what an abled person can manage, but it allows me to live, dress, and care for myself consistently.
And finally, social support systems. My friends who help me emotionally and spend time playing games or speaking to me. My family, who will help me when I am too sick to help myself and who comfort me. Disabled people are so, so isolated by their conditions, by social stigma and by physical barriers to existing out in the world. People are so important to people, and every person who reaches out even just to speak with me about a movie help me so much.
4. Do you struggle with any particular emotions due to your condition?
Hoplessness about the future. Loneliness. Despair.
Anger, because the world I live in doesn’t want me to live well or comfortably.
Pain. Being in pain every minute of every day, or flares that are so intense and last for a full day or more, are traumatic experiences that can leave a person struggling to cope.
5. How do other people behave around you? Do they treat you differently?
Most of my closest friends are also disabled in some way, and that is telling. Other people will often act awkward or avoidant of the topic of my disability, or even of me entirely when they find out about it. I often get pity, I sometimes get praise, but it is isolating and very, very obvious that people don’t know what to do. I try to be compassionate; people aren’t taught how to treat disabled people lie people, I’ve noticed.
Some people try very hard. Some people openly exclude me. The worst is the people who think they are trying very hard, but instead of listening they like to decide for themselves what the best way to support me is, then praise themselves for the condescension. It’s dehumanizing.
6. What was your diagnosis experience like?
I started to get sick partway through highschool, but my doctors at the time told me I was under a lot of stress, had PTSD and should get therapy. It wasn’t until my senior year of college, when I was 21, that a family friend with POTS told me that I probably had it and should seek out a diagnosis. I had to take a medical year to do so.
The first doctor I saw was the cardiologist, whom I told all my issues and then sent me for about half a dozen useless tests that did not test for POTS. He would often scold me and tell me to treat him more respectfully when I tried to advocate for myself. After the weeks of tests, he told me that he thoughts I did have POTS, but he wasn’t going to send me for the proper test because I was so young and he didn’t want me to live with that diagnosis hanging over me.
I had to go to three more doctors before a neurologist finally agreed with me and ordered the test, despite it not being run by his department. Through sheer luck, the only POTS specialist in the state was at the hospital on the day I got my test and saw the results immediately, which were definitive. She decided to get me an appointment to see her within the next month. I would have waited over a year for one if she hadn’t done that.
My experience with doctors has ranged from horrible and gaslighting to extremely supportive and helpful. It took almost ten years, but I am now with a team of doctors at an amazing medical center who are doing real work to help me. It shouldn’t have taken ten years, though. I didn’t deserve that.
7. Have you seen this condition represented in media (TV, film, books, video games, etc.) before? What are some common pitfalls or stereotypes writers should avoid?
I have never seen this condition represented in fictional media, but I have seen extremely hurtful and harmful articles and news about POTS and other related syndromes. It’s sometimes called the “Fainting disease” and reduced to a meme of a person falling over at the drop of a hat. It sometimes makes us the butt of a joke. Writing a person with POTS in that manner is extremely offensive, so…don’t do that.
8. What are things you can’t do because of your condition? What are things you can do?
I can’t drive, because of my brain fog and fainting. I can’t cook, because the heat can also trigger fainting (I can’t cook with heat, at least. there are some things I am able to prepare). I can’t sustain physical activity such as running, hiking, or dancing for very long at a time, or if I do I am doing it knowing that I will flare with a few hours to a day.
I can dance for short amounts of time. I can care for myself in terms of dressing, eating, cleaning my room in short bursts, showering, etc. I can play video games or write for hours, although brain fog may some imes make the quality of that vary, it can still be fun and worth doing. I can care for my dogs, feeding them, giving medicine, training and going on short walks. Standing outside to throw toys for them. I can play piano. I can sing.
9. What advice would you give to someone who wants to accurately write about a character with this condition?
Just remember that despite what people see of us on the surface, this is an extremely fundamentally destructive syndrome. It is the body responding in improper ways to anything and everything, causing pain, confusion, and many other things. When writing a character with POTS, one should keep that in mind at all times. Think about how it works from the inside out, and the many ways a person is invisibly coping with it at all times.
Remember that anyone with a physical disability will be constantly trying to balance what they need to do with what they are able to do, and it doesn’t always match up. We are constantly prioritizing things to the best of our ability. We also tend to get very very good and maximizing efficiency and minimizing exertion on anything we need to do, adopting creative methods to fit our needs without making ourselves sick. And, sometimes, such as in a crisis or when we simply can’t get around something, we will push ourselves too far and accept that we will get very sick shortly after. This is not something to be abused, though; we tend to need a good reason to do that.
Do research. Read blogs. Speak to people with POTS, if possibe, and get sensitivity readers. I am generally open to speaking about my disability and how it works; my twitter will be below.
10. What advice would you give to a writer creating a character whose disability intersects with other minority identities—such as gender identity?
Women tend to be taken less seriously by medical professionals. Doctors also tend to perceive people of color as having higher pain tolerance and don’t treat them properly for pain. If you wish to touch on these things, take some time to learn and understand the realities of how our medical systems tend to treat people of these identities and use that to inform the nuance of your portrayal.
In other ways, always keep in mind that while our physical disabilities are physical in nature, emotional and mental stress can cause worsened symptoms and flares. When writing a character with POTS especially, emotional stress can cause wild changes to heartrate and cascade into other parts of the body causing pain, weakness, foggy thoughts and dizziness. A character that is undergoing a very stressful time, which I know we all put our characters through, will need to handle their own health while handling the crisis at hand.
This can open a lot of opportunities for character struggle, trauma, growth, support and bonding with other characters, or even manipulation and exploitation by villain characters. A character with a disability opens up amazing story opportunities that we rarely get to see in current mainstream media, so have at it.
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