When You Love Someone With Postural Orthostatic Tachycardia Syndrome

Postural orthostatic tachycardia syndrome (POTS), a form of dysautonomia, is a chronic illness that affects more people than multiple sclerosis and Parkinson’s disease and causes quality of life analogous to congestive heart failure. Yet it is incredibly unknown and chronically misdiagnosed as anxiety or “all in the patient’s head.”

Here are some ways to help someone you love with POTS:

We feel a lot. A lot of the time we may be struggling with guilt, depression or other various stages of dysautonomia. We are constantly aware of how the dishes aren’t done, that we bailed on your invite again, and that — at least for the time being — it feels like the person we used to be is gone.

This doesn’t mean we can’t be, or aren’t, happy! We’re still the same person, just under far different circumstances. However, just because we look or sound or seem OK doesn’t mean we aren’t in pain or exhausted or didn’t just throw up in the bathroom because our blood pressure suddenly dropped dangerously low.

We are more than our illness. Talk to us about things we love and enjoy. Treat us as a person because we need to be seen as one. We aren’t breakable, but sometimes we aren’t entirely whole. And we need to be reminded we still are someone even with this illness.

Ask questions. “How does brain fog make you feel?” “What do I get you if you faint?” “What can I do to help?” It shows us you care, that you want to learn, and it validates what we’re feeling. This automatically puts you far ahead of 90 percent of the doctors we come into contact with.

Help us find something we love that we can do despite the debilitating fatigue. When I was extremely ill, I was too tired to concentrate on books or make it through entire movies. But I rekindled a love for photography (even though my pictures consisted of the four corners of my bedroom for two years) and it kept me going. Knitting, drawing, coloring — anything that can show us we are still human and can still contribute to ourselves and the world.

Use your judgment to help encourage us and remind us to take it easy on ourselves. Point out the little things we’ve accomplished because seeing progress helps us keep fighting (such as, “I don’t blame you for being tired, you [walked up the stairs on your own today]! Sounds like it’s time for some well-deserved rest.”).

Help get us outside or open up a window. Not when it’s sweltering hot or freezing, of course. And we may only be able to handle it for a few minutes, but feeling the sun on our faces and fresh air in our lungs can be some of the best medicine.

Realize the things that make us happy (like being outside for a little bit) can also make us sad because they remind us of our limitations. Be cognizant of this.

We need to learn to listen to our bodies. This can be especially hard for those of us who have spent our lives pushing beyond our limits and never slowing down. Remind us that we aren’t weak, that it is OK to take care of ourselves and put our needs in front of other things. This also includes letting go of emotions, thoughts, etc. that do not serve us. I have found a lot of people with POTS to be extremely sensitive people. We have to learn new ways to manage stress and our own active minds. Talk this through with us. Come up with a game plan together. Be our teammate, not our keeper.

You won’t always know exactly what to say or what we need to hear. That’s OK, just tell us that. Even though it can be difficult for us, we must communicate our needs to you and learn to ask for help as well. Plus, that’s much easier than someone just disappearing on us or pretending nothing is going on.

Love us. We feel bad about all the sh*t we put you through. Remind us that you are your own person and that you are choosing to stay with us.

Tell us it’s OK. It’s OK to be tired. It’s OK the dishes aren’t done. It’s OK you didn’t get to vacuuming. It’s all OK because no matter how strong we are — mentally and physically — or how long we’ve been managing with POTS, it still throws us for a loop. We still beat ourselves up. Remind us we don’t have to be strong all the time, that we aren’t lazy and that it’s OK to be sad as long as we eventually get back up and keep fighting.

And with your help, we will.

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Find this story helpful? Share it with someone you care about.

Related to Postural Orthostatic Tachycardia Syndrome

girl sitting in wheelchair wearing colorful hat

My Daughter's Response When I Worried What People Would Think of Her Service Dog

When you are the parent of a child with disabilities, you may often have friends forward you video clips or stories of children dealing with similar issues. This to me is generally a positive thing. It means that for one, someone cares enough to send you the clip or story. For another, it means your [...]

My Chronic Illness Manifesto for 2016

For the past several years, chronic illness has kept me on the couch during New Year’s celebrations. This year, I hoped for a different picture: spending the holiday at a cabin in the woods with my wonderful, patient boyfriend (of almost a year!) and our close friends. Instead, I will be on the couch again. Due to my [...]

To My Friends Who Don’t Understand How Illness Affects My Social Life

Dear friends and loved ones of those with chronic illness, I’ve been struggling with chronic illness for about three years now. I had health problems before, but three years ago they began to take over my life. Ever since then, I’ve been on a slight but steady decline. I used to go out with friends [...]

To the Doctors Who Told Me My Physical Problems Were Psychological

My health took a bad turn last October. The biggest issue was syncope, or passing out. It came literally out of nowhere. It was scary for myself and those who loved me. We wanted answers. And naturally when you’re sick and want answers, you look to doctors. Little did I know finding a doctor who would [...]