Tips for the newly diagnosed:
1. Join an online Facebook POTS support group but turn off notifications for the Facebook groups so they don't plague your newsfeed. It won't be good for you to see every negative aspect of POTS in your newsfeed 24/7. The two that helped me the most were named "POTS" and "POTSRecovery.org" Getting support, advice, and doctor recommendations from these groups was incredibly valuable to me. However, you have to remember that no 2 people with POTS are identical. What might help one person with POTS, might harm someone else.
2. Educate yourself about POTS as much as possible. An educated patient is an empowered patient. Unfortunately, you'll most likely spend a lot of your time educating other doctors as well. You'll quickly learn that printing off medical articles about POTS and bringing them to your doctor's appointments will ensure they (usually) treat you more seriously too (for more tips on getting your doctor to listen, read this blog post). You'll eventually acquire a great team of doctors but I'm not going to lie, it'll probably take a lot of time and effort.
3. Don't stop moving. I know this one seems counter-intuitive because moving makes your symptoms worse. But if you become deconditioned, it'll make your symptoms so much worse. I know from experience. You don't need to push yourself beyond your limits but don't stop moving. Read this blog post I wrote that will help explain why.
4. Connect with other Potsies on a personal level. You'll quickly come to learn that many people in your life will not be able to understand what you're currently going through, so this kind of connection will be really important in the beginning.
5. Allow yourself to grieve your old life. Give yourself the freedom to feel the depths of this emotional journey. Your life won't look like it used to, because you can't go backwards (and eventually won't want to because you'll have learned more wisdom and have experiences you won't want to erase), but you'll feel better than you do right now again.
6. Search for a cause of your POTS but try your best not to let the unknown torture you.
7. See a counsellor. This is a huge life adjustment and you don't want to emotionally dump everything you're experiencing on your loved ones because they will not be able to handle it, at least not for a long period of time (this kind of relationship is unsustainable). If you are bedridden/housebound, search for a counsellor who can do sessions online.
8. Purchase this book: "POTS- Together We Stand." It'll help you understand your body, what can flare POTS, what can help it, and possible causes of POTS. There's also a great chapter on grieving your old life with your chronic illness.
9. Remind yourself that you will feel better than you do right now. It's hard to believe, and I know I sure didn't believe it at the time, but you will. You won't always be in a flare forever. Although there isn't a cure for POTS, I believe there will be one in our lifetime! Most patients with POTS do experience an improved quality of life 6 years after diagnosis. Your body may start to stabilize on its own, or with the help of many treatments. A flare can't last forever.
10. Don't isolate yourself. Many people who develop POTS lose friends due to their illness, and/or don't want to go out or have people over and see them in their current state. I was the latter and developed social anxiety, like many patients with POTS do, after chronic isolation. Connection is a human need. Check out this blog post I wrote about chronic illness and isolation.
11. Learn to set boundaries to protect your mental and physical health. You can't do it all so you'll need to learn to say "no" without guilt. You are not a burden. You need to protect your health at all costs, even if that means distancing yourself from people and things that drain you.