Things I Wish You Knew About POTS

It's easy to be misunderstood when you have POTS, postural orthostatic tachycardia syndrome.  It's like your shouting down a pipe and no one really hears you.  We see you.

When it comes to family and friends, it can be hard to get them to understand what life with dysautonomia is like.  They may want to understand, but unless they're told exactly what your life is like, it may be difficult for them to fully get it.

We compiled a list of things we wished people knew about POTS.

Not all days are equal.

Monday I felt great!  I was energized and the rest I had over the weekend was fantastic.  But, today is Tuesday and I'm not feeling the same energy I was yesterday.  Each day is different for me, and sometimes things can change without warning.  I wish I could decide what days I felt good, but I can't. 

I'm grieving my old life.

When we think of grief, we usually think of the emotion as it relates to losing a loved one.  Grief can be more than just loss of life.  I am grieving my old life. 

The future life that I thought I would have has slipped away and now I'm learning to come to terms with it being different than I anticipated.  My old life before I was sick was amazing; I was more active, never ditched friends/family, and I didn't have to think about how much energy I was expending.  But now everything is different and I'm learning to embrace it, but that doesn't mean I'm not sad about it.

Yes, I need this much salt.

I'm aware that some people need to be careful with how much salt they consume and yet you see me eating crazy amounts of salt.  That's because salt consumption is one of best ways I can manage my POTS.  The Cleveland Clinic recommends people with POTS get up to 10,000mg of sodium a day!

Personally i use NormaLyte because it's an oral rehydration salt and has been clinically proven to manage symptoms of POTS.  It's been a game changer for me and has made it so that I don't have to dump a salt shaker on all my food.

My illness isn't made up.

There's a lot going around online and even in real life where people are gaslighting me essentially saying that my illness isn't real.  Doctors are notorious for this, saying that it's "just" anxiety.  I know my body and it's not operating the way a normal person's body is.  This happens even when I'm not anxious.

To all the doctors who gaslight us, this is a REAL illness and it's possible I may know more than you about my condition.  You can't be an expert on everything, but I can be an expert on the chronic illness that affects me.  I want to get better, and that sometimes means I have to advocate for myself.

I can't catch my breath.

There are times when I really just cannot catch my breath.  Sometimes just talking to you can make me lose my breath in a way that makes me feel like I'm drowning.  It literally feels like I just ran a marathon.

I'm not lazy.

I'm not lazy!  There are times when I know that my body can't handle much more, and that may mean I have to sit or lie down more often than others.  It's physically taxing for me to do some of the same activities you do.  Just because I have a wheelchair or other assistive tools doesn't mean that I can't walk.  It means that these tools help me save my energy so that I'm able to participate more.  I have to pace myself because pacing is so important with dysautonomia.

There's been times when I pushed myself because I was having fun and really enjoying the experience.  The next few days I just wanted to cry because I was paying for the fun I had the day before.  Or maybe it wasn't something fun, maybe I just cleaned my house yesterday.  Whatever the reason, I'm resting (not lazy!) because that's what my body needs.

Your advice won't help.

You mean well and it shows me that you care.  However, the advice you give likely won't help me.  My POTS or other form of dysautonomia affects me in unique ways.  Things like eating healthier is subjective; what's healthy for you may not be what's right for my body.  Exercise is great, but I'm intolerant and I need to exercise at my pace, not yours.  Sure, your friends cousin has POTS, but even among those of us with the same illness the way we manage our symptoms can vary greatly.

I never feel good.

Sure, there are days where it's "better".  Even my best day, if you experienced it you'd see how bad it really is.  I have a whole list of symptoms that are considered normal for my form of dysautonomia.  Some days it's super mild and I only experience a couple symptoms that I'm able to ignore.  Other days I feel every single symptom.

My illness isn't visible.

This may be the most important fact.  You cannot see my illness.  It's not a one size fits all situation either.  Some people with dysautonomia or POTS may be able to live fairly normal lives.  Other people may need all the mobility aides and really think daily about how they're spending their energy.  And those people may flip to the other side without warning or reason.

To support me, simply just say "How can I help you?" That's the best way to figure out what I need from my friends and family.