How to Support Someone with POTS

Disclaimer: I am not a medical professional. I can only speak to my own experience and hope that gives you some insight into what POTS is and how it can affect you or the people around you.

What support looks like

1. Listening

I know it’s a lot, I know it makes your head spin, it makes mine too and I’m going through it. You can tell me you don’t have the mental space for this but comment like “another medical problem?” only make me feel worse and unheard.

2. Being there

There are so many times where I have been physically unable to make it to a social event and it has been devastating. Coming over and watching a movie with me during these times is amazing. There have been times that was the only socialization I got outside of my parents and sister in a month.

3. Be flexible

There are times when I will have to cancel plans or maybe I can adjust plans. Maybe I can’t do a 2 hour walk today in the heat but could we walk around the mall for a bit and grab a bite to eat? Being able to change plans and reschedule goes a long way. I know it looks flighty a lot of the time but I promise I don’t want to cancel or change plans and it’s so hard to ask to change them each time.

4. Be Patient

I might not be able to walk as fast as you or eat when you can eat but I will get there. I promise I want to socialize and be with you too, please just be patient with me so we can have a good time.

5. Educate yourself

Learn about POTS, find out what it is and what it looks like. If you only see me a few hours a week you’re only getting a small glimpse of what my life is like. That tells you very little of what I went through to get to such event. Learning more about my chronic illness can help you understand me and what I am going through.

What support does not look like

1. Tell Me What I Can Do With My Body

Unless you’re my mother please do not tell me what I am and am not capable of. I know my body, I know more about my illness than you do. When you tell someone that has a chronic illness what they can and cannot do it feels controlling and like you’re their nurse which is not a good feeling at all. Check in is always welcomed but don’t tell me what to do.

2. Pushing Me Too Far

If I say I cannot do something I cannot do it. You need to listen to me and respect my boundaries. By pushing you could put us both into a dangerous situation at worst and at best you could make me sick.

3. Dismissing My Concerns

I know I have a lot of medical issues but when something new pops up and I’m scared please listen and don’t just dismiss what I’m worried about. If you don’t have the mental room for it because you’re dealing with too much in your own life to take it on, please tell me that and I will respect it but don’t just throw away my worries and fears. It takes a lot for me to open up to you about my chronic illness and how scared and worried I am in the first place.

4. Offering Unsolicited Advice

You’re not my doctor, how much about POTS do you really know? Do you think I haven’t tried it? Do you really think you can come up with the ultimate cure for POTS? It’s annoying and makes me feel like you’re not listening to me.

5. Assuming everything you read is true

Ask me before making assumptions. POTS is widely different in everyone and making generalizations can damage our relationship. Ask me before coming to conclusions about my life.