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.
It’s hard to have a chronic illness and an active social life. There have been plenty of times in my life when I do not feel up to going out or even have not been able to participate in.
Surround Yourself with People Who Will Support You
Not everyone you meet wants to deal with someone with a chronic illness. That is not on you but also not on them to have to deal with if they cannot handle it. Please do not take it personally if they do not have the capacity to deal with your chronic illness.
That being said, there are people who will go to the ends of the earth to support you. Be gentle with yourself and your friends, they might have a lot going on in their life and they might always have the capacity to handle your medical emergencies so check in with them before you need to rant. Even with that if you have a medical emergency where you need a friend, I’m sure they’d set up and help you without a second thought.
Pick and Choose What to Add to Your Schedule
It totally depends on you and your body but there are things that are going to make you sick so plan for that. For example you get an offer to go for a 3 hour walk in the heat and an also an offer to go to the movies. The movie is probably a better bet if you have plans the next day but if you can be sick the next day and the walk is what you want to do then do it. You just need to know there might be repercussions.
Take Breaks
Plan days to rest and relax. You will need these to recover and if you build them in then you won’t have to cancel plans as often. You will still need to cancel but not as often. For me, I’m worse from February to March so during those times I only plan 2 social events a week. In the summer, I feel my best so I tend to plan something for everyday but make sure to not plan anything before 1pm so I can sleep in. Of course if you don’t have summers off (I’m a teacher) then you’ll need a different schedule.
In the middle of a social situation make sure to take breaks if you need it. A supportive group will understand this. Try to give as much details as you can with overloading. For example, “can we take a 10 minute break here? My heart rate is just a little high” is better than just saying “I need a break” without any explanation or going into too much detail might freak the person out. Of course that depends on who you’re with and how much they know about your illness.
Sometimes Through No One’s Fault You Will be Left Out
The truth of the matter is there are times you will be left out. This will make you feel like shit. It will always make you feel like shit but at the end of the day the people who support and care about you might need to leave you out. There are times when my closest friends have gone on an 8 hour hike without me. They deserve to go on a hike and that is not something I can do. It still hurt to be left out but I understood both sides.
Communicate with People Best You Can
Try to educate people on your illness if they are willing to learn. Know they might still have adverse reactions to it but do your best to explain what you can. Also try to communicate when you cannot go to events as soon as you can. If you’re having a bad day, tell them and maybe they can hang out on your couch instead of going to a bar. The more you communicate the better off you’ll be.