A letter to fellow POTS patients

[POTS23]

Dear Fellow POTS Patients,

We are strong. It is so important to us, and part of who we are, to always stay positive and never give up. It is not easy: especially because we have struggles most people don’t know about- an “invisible illness.” I was recently diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) after 6 years of doctors repeatedly telling me I was a “medical mystery” (yes, 5 of my doctors actually used those words). Like you all, I had mixed emotions when I first was diagnosed by my newest cardiologist- I was beyond thrilled to FINALLY have an answer, but I was scared because there is no cure or official treatment. It hit me that this wasn’t just going to go away- I would need to learn to live with it. But, I love a good challenge that involves self improvement and research, which are both key to us with POTS. 

 

First, let’s recap what this POTS thing actually is, because the vast majority of people, including lots of doctors, don’t know what the heck it is. It is a disorder of the autonomic nervous system. This branch of the nervous system regulates functions that are automatic, such as heart rate, blood pressure, sweating and body temperature. This means our symptoms include: an exaggerated increase in heart rate especially when standing, intolerance to cold and hot temperatures, extreme fatigue, blurry vision, dizziness, brain fog and memory issues, upset stomach, and more. A lot of people will ask how we cure these symptoms. The answer: there is nothing we can do but eating a ton of salt, drinking as much water as possible, and consistent exercise can help.

 

I think what’s harder than dealing with all of these unpredictable symptoms every single day, is the fact that people say we “don’t look sick”. Many POTS patients are told by doctors and loved ones that the symptoms are “all in their head.” It is not.We are constantly trying to be strong and put on a smile but having POTS is hard. When people comment on my sunglasses I wear at my desk or the ungodly amount of salt I have to put on my food or when I have to sit on the floor for a second at the bar when there are no chairs, I just shake it off. The POTS community wants to remind everyone that people have their own battles so don’t jump to conclusions or make judgements. 

 

Some days are harder than others and it’s easy to get down and think “why me?”, but it is so important to surround yourself with supportive people who check in on you, are sympathetic, and are willing to learn about to help keep your symptoms at bay. I am lucky enough to have some close friends and family who have made this battle with POTS a little easier. Those who remind us of how strong we are and what an amazing job we are doing as we handle this chronic illness- we thank you. 

 

So what do we want people to know about us struggling with POTS?

• Every day is different- sometimes we feel good, sometimes we just want to curl up because it's miserable
• We really appreciate when you ask us how we are doing and offer us a chair and automatically hand over the salt shaker
• POTS is complicated and we need to learn how to adjust our life to best manage symptoms
• It can be really frustrating to not be able to do the things we used to do
• We don't always want to be complaining, but we will tell you when we need to sit down or take a break
• Yes, we really do need all of that salt on our food
• Some activities are easier than others and it might not make sense to you (i.e. I tell you I can't walk too quickly, but can complete a swim workout)
• We still want to be invited to everything
• Please spread the word and help us with our research

 

My dad sent me this article from a fellow POTsy girl, it is spot on: http://wpde.com/news/local/the-article-i-wish-id-had-diagnosed-with-pots-and-still-anchoring-the-news

 

[MissMermaid]

Thank you for sharing ❤️

[Jwarrior77]

Thank you for writing this. I'm currently dealing with overwhelming anxiety about this condition and constantly doubting that I'm going to be fine as I feel like death almost daily now. We all need some encouragement. 

[Pistol]

@POTS23- yes, what you went through is pretty much text-book for all of us. I went through the same thing - years of seeing ignorant and misinformed docs, having to find on my own that I had POTS and requesting referral to a specialist - and then finally over-the-moon just because now my symptoms had a real name! Unfortunately this is reality for most of us. Thank you for sharing your story - I wish you strength and patience in dealing with our ever-changing symptoms. Be well!!!!

[MTRJ75]

17 hours ago, POTS23 said:

 

Some days are harder than others and it’s easy to get down and think “why me?”, but it is so important to surround yourself with supportive people who check in on you, are sympathetic, and are willing to learn about to help keep your symptoms at bay. I am lucky enough to have some close friends and family who have made this battle with POTS a little easier. Those who remind us of how strong we are and what an amazing job we are doing as we handle this chronic illness- we thank you. 

 

I'd like to find more of these supportive people. I seem to have a group that's more tolerative than supportive. When I ask for help, they'll give it. I do feel guilty about the burden I place on people sometimes and sometimes they seem frustrated that I am unable to do help them in return. I get a lot of "all you have to do" because it's a simple thing or something I used to be able to do easily. 

I've also found myself calling friends less frequently because I want to do something other than complain to them. Lately I'm noticing a lot of friends and family rarely ask how I'm doing anymore or if they do, they'll listen without responding or quickly change the subject. 

If I try to put myself in a positive mind space and "act" less sick, I'm met with higher expectations. "You're in a better mood so you must feel better" or "you're don't look or sound as bad so you must be able to do (whatever they want done) now". 

It's incredibly frustrating not only to not be able to do what should be simple tasks, but also to keep having to tell people you can't do them even if you look fine and just did something else and also keep having to explain the same things to them. And I don't blame them either. I never would have been able to understand any of this until it actually happened to me. 

[Magalot]

Brilliantly put, thank you for expressing it so well!

I really struggled after diagnosis, I thought I would feel better once I knew what was wrong with me, but instead the 'weight' of having a chronic illness was quite overwhelming. I am coming to terms with it and CBT is helping. 

I found that friends and family were super supportive at the beginning but now that I am coping pretty well, managing at work etc, they seldom check with me how I'm doing.  It's like they've forgotten how unwell I  can be at times and how much of a struggle simple things can be because I appear to be well .