How to best communicate support to your loved one with POTS

It is hard to know how to support someone going through something as difficult as living with a chronic illness when you have not experienced it yourself. It can be extremely daunting at times but as long as you are willing to learn and grown in your support, it is more than good enough. Knowing what exactly to say can be a big obstacle in showing support and them feeling truly important.

Here are some things to avoid when talking to your potsie loved one:

1. Avoid dismissal – ex. “Sounds like you are just anxious right now”, “Some people have it way worse”, “It can’t be that bad”, etc.
2. Avoid unsolicited advice – ex. “A vacation will make all of this better”, “Have you tried yoga? I’ve heard it can cure POTS”, “You need to get out more”, “Have you tried to forget about your symptoms?”, “I don’t think you should have kids/pets”, etc.
3. Avoid assuming – ex. Assuming they are fine because they look perfectly okay, Assuming they will ask for help if they need it, Assuming they aren’t in pain because they didn’t say they were, Assuming that the event is accessible to them, etc.
4. Avoid toxic positivity – ex. “Be strong and it will all go away”, “Just stay positive!”, “For someone who is sick, you look amazing and should be thankful for that”, “God will cure you so rejoice in that”, etc.
5. Avoid comparisons – ex. “I get pain from time to time too and I just deal with it”, “Person has it worse so just be glad your not like them”, “I’m older than you so I’ve been through worse”, “I used to have bad POTS but it got better so you must be doing something wrong”, etc.

These negative questions and comments can leave a potsie feeling unheard and unsupported. While it might seem like a reasonable thing for you to say in your mind, it can be extremely hurtful to the person you are saying it to. Instead of assuming what you don’t know, ask more questions. Some potsies may say some of these things about themselves too as a way to self deprecate but it important to remind them that they are worthy of support and understanding. Instead of these unsupported questions and comments, try re framing your words.

Things to say to your loved one with POTS:

1. Supportive questions – ex. “How can I help you feel most supported this week?”, “How can I learn more about your illness?”, “Can I get you anything so you don’t have to stand up?”, “What would be best for you?”, “Are you comfortable talking about it with me?”, etc.
2. Encouraging reminders – ex. “Your illness does not impact how much I love you”, “I’m so proud of you for all that you have conquered”, “I’m here to listen if you are comfortable sharing”, “You don’t always need to be strong. Its ok to not be ok”, “All wins are big wins”, “I will always be here for you, even during the tough times”, etc.
3. Additional supportive phrases – “I may not be able to fully understand but I see you and I am here for you”, “I am glad to continue making room for what comes up for you”, “I believe in you”, “I can see how hard you are trying everyday”

Every potsie wants to be supported in different ways, but these are just a few phrases and questions to ask to be as supportive as you can be. Like I said earlier, the most important thing is that you stay learning and growing in your support. Your potsie loved one will let you know how they need support and affirmations in their own way and accommodating to that is the biggest show of support. Nobody is perfect but we can all always try to be better.

If you have supportive questions or phrases please submit them to me to be included in an upcoming blog. I am only one person with one lived experience so your insight is beyond useful to better my understanding of the world and of my community < 3

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