Thank you to the amazing Emmie for this awesome guest post! I am especially thankful for it because we’re trying to figure out if I have POTS, so it’s great to see this post. Also, you know, I’m still recovering from surgery, so yay for guest posts.
Hi! My name is Emmie, and I’m one of Kate’s friends from college, as well as a fellow member of the spoonie (chronically ill) community. I decided to add to the health part of her blog by sharing about an under-diagnosed chronic health condition, postural orthostatic tachycardia syndrome (POTS). Though it’s somewhat rarely diagnosed, somewhere between 1-3 million people in the United States live with it! I got this set of questions from the folks who ran Invisible Illness Awareness Week 2015, so thank you for the broad sweep of stories I get to tell based on them.
1. The illness I live with is? Postural orthostatic tachycardia syndrome (POTS), which is a form of dysautonomia. Dysautonomia is an umbrella term for syndromes that involve misfirings of the autonomic nervous system. You can learn about POTS’ mechanisms and vast array of symptoms in this short video.
2. I was diagnosed with it in the year: 2016.
3. But I had symptoms since: My entire life, but they got far worse once I turned 20 about 4 years ago.
4. The biggest adjustment I’ve had to make is: In order to manage the symptoms I get the most – higher-than-normal heart rate upon standing or sitting, fatigue, brain fog, dizziness, sweating, weakness, headaches, and nausea – I’ve had to adjust my life significantly. Because of all of these adjustments, though, I’ve started to feel so much better. I had to start exercising 4-5 times a week, weight training 3-4 times a week, eating 6 small meals a day, ingesting 4-8x the amount of salt as a person without POTS to help my blood flow to all parts of my body better, wearing compression stockings or compression shorts, taking 3 different kinds of meds for the symptoms, drinking about a gallon of water a day, and trusting my body to do what it needs to do, even though I know it has problems. These take a lot of time, effort, endurance, and patience, and I’m not perfectly adherent in keeping them, but I do my best. I’ve written an entire piece on managing it, if you need some Mayo Clinic-approved and personal success story-proven tips.
5. Most people assume: That the main symptoms of orthostatic intolerance (having the heart rate shoot up and not go back down, like it’s supposed to, upon standing up) and exercise intolerance (though you can train up to it!) are due to laziness and being out of shape. Some doctors don’t think that POTS is a real problem, and one even told me that it’s the “medicalization of inactivity.” That’s just wrong.
6. The hardest part about mornings are: Knowing that getting out of bed is going to make me feel dizzy, nauseous, and fatigued. Once I drink a few cups of water, take my meds, and eat my first small meal of the day, I start to feel human.
7. My favorite medical TV show is: Grey’s Anatomy.
8. A gadget I couldn’t live without is: Specifically for managing POTS, my Fitbit. I have a bunch of other favorite products that help me manage my life, though, which I’ve put into lists based on the kind of help they give me: vocational.30 Things about Living with POTS Click To Tweet
9. The hardest part about nights are: Sometimes being absolutely exhausted and feeling like I have nothing left in me to the point where I don’t want to talk or do anything. However, when I manage my symptoms well, and make sure to moderate and pace myself throughout the day by taking rests, I can make it to the end of the day these days. It’s often my fibromyalgia (a chronic pain syndrome that can be linked with POTS) that gives me the most trouble by the end of the day, but that’s a different story.
10. Each day I take: 12-14 pills & vitamins.
11. Regarding alternative treatments I: Believe in ones with evidence and don’t buy into the ones that don’t. There are a lot of non-medical things that I do to manage my POTS symptoms (see articles on how I manage and what products I use for my vocational and physical health, but I’d be toast without my medications for it to help bolster what I already do.
12. If I had to choose between an invisible illness or visible I would choose: This is a can of worms. Living with an invisible illness (or, in my case, four different ones) means living in a liminal space where you’re never quite healthy enough, yet never quite sick enough. The truth is that many chronic illnesses are only invisible if those around you choose to avert their eyes. However, when I was at Mayo Clinic’s Pain Rehabilitation Center, I learned how to do what we termed “stealth moves” to take care of myself without others noticing so as to not worry others around me, as well as not have my life revolve around pain and symptoms by others’ constant questions. (I couldn’t recommend the PRC enough because it gave me back my life. And, amazingly, in my young adult cohort, more than 80% of us had POTS! There was an unspoken and life-changing understanding among us). At this point, I’m grateful they’re invisible because it allows me to more easily live life without others worrying or trying to accommodate me because I can usually take care of myself. However, I’m glad that I have many trustworthy family members and friends who remind me that I don’t have to go it alone.
13. Regarding working and career: I have to take care of myself very carefully and closely in order to assure that I will be able to keep going strong. There have been various points in my chronic illness journey when I didn’t think I’d be able to work even a part-time job, so it’s a miracle that I’m interning as a hospital chaplain with more than full-time hours now! (I’m working 75 hours one week because, you know, 24-hour on call shifts. What). I get to do work I love, so I try to keep well enough to do it.
14. People would be surprised to know: Just how fatigued I feel so much (read: all) of the time, yet I come across as having a lot of energy because I’m a positive and gregarious person. Looks can be deceiving, but I’d rather live life to the fullest I can rather than having it pass me by.
15. The hardest thing to accept about my new reality has been: Slowing myself down on my best ways, or pushing myself on my worst days. It looks different every day, and it’s hard not to be able to be as consistent as I’d like to be.
16. Something I never thought I could do with my illness that I did was: Hike up steep mountains again! I may be the sweatiest person alive when I get to the top, but y’all, what a gift it is to be able to see the world on foot, despite what my heart rate can be. This is a picture of me on my way up Masada in Palestine, which is pretty much a straight-up cliff that goes more than 1,300 feet up.
17. The commercials about my illness: Are nonexistent. Most doctors have no idea that it’s a thing, so why would there be lucrative pharmaceutical enterprises for it? (Note from Kate: This is something I have run into. When I was hospitalized over my birthday, the attending suggested I talk to my PCP and rheumatologist about me having POTS. My PCP, who is in her 60s or 70s, had never heard of it before.)
18. Something I really miss doing since I was diagnosed is: Actually, getting my diagnosis helped me get things that I had lost back.
19. It was really hard to have to give up: Getting to be totally carefree about my health. It’s a job, y’all. But you have to laugh anyway – otherwise you won’t make it.
20. A new hobby I have taken up since my diagnosis is: Taking walks around the neighborhood on days that I want to get exercise, but don’t feel like going on the elliptical.
21. If I could have one day of feeling normal again I would: You know, at this point, I live a pretty normal life by my own standards. I wish I could be a bit more consistent and carefree, but that’s a human struggle that we all go through at points in our lives, no?
22. My illness has taught me: How weird the human body can be! I can’t even describe the strangeness of some of the tests that you have to undergo to get diagnosed conclusively with a dysautonomic condition. Here are two pictures from my diagnostic period at Mayo Clinic: one of me wearing all sorts of medical devices to monitor my heart rate and blood pressure, and after I underwent a sweat test to make sure I had autonomic nervous system dysfunction rather than brain damage They put sand on you that turns purple on contact with sweat. Let’s just say I was amused, but also disturbed.
23. Want to know a secret? One thing people say that gets under my skin is: “You’re so lucky to have a handicap permit for your car!” (I use one on my worst health days.) I would do anything to not need one, so this one small societal perk isn’t even sort of worth the sometimes-disabling health conditions that allowed me to get one. “God has a good plan for your health problems.” This is plain old unhelpful and even aggravating. I believe that God does beautiful things with the situations surrounding them, and I am grateful for what I have learned, but I would erase the health problems from my life in an instant if I could.
24. But I love it when people: Are willing to sit with me when I need to take a break; flexible in making plans with me, including adventurous ones; and compassionate about what I go through, not seeing me as a victim, instead hear and help bear my pain.
25. My favorite motto, scripture, quote that gets me through tough times is: “We are all in the gutter, but some of us are looking at the stars.” – Oscar Wilde
26. When someone is diagnosed I’d like to tell them: That this isn’t the end of the world, even though it sometimes feels like it. How much they can work to improve their situation. How they’ll be able to have a good life, despite their symptoms. I’m living proof that things can change if you’re dedicated, and I am no stronger than you.
27. Something that has surprised me about living with an illness is: The compassion, wisdom, and patience that accompany it. I’ve become a much better listener and friend now that I know more about what’s like to undergo the unexpected and undesired.
28. The nicest thing someone did for me when I wasn’t feeling well was: Take out the trash that had been accumulating for weeks, make me dinner (a dish that fit my dietary restrictions), and do the dishes for me. I sobbed. And that’s just one example – I could name so many more. I love my friends so much.
29. I’m involved with Invisible Illness Week because: 96% of disabilities are invisible, yet everyone assumes that disability is a binary where you’re either visibly disabled or entirely healthy. No such thing, y’all. I’m also involved in invisible illness awareness campaigns because being disabled does not mean that I’m a total inspiration or a horrific tragedy. That’s another false binary around disability, so I’m smashing the expectations by sharing my lived experiences – the gray area, a liminal space rather than one that is black and white.
30. The fact that you read this list makes me feel: Glad because this is an under-diagnosed syndrome that needs more attention! Thank you.