LindsayYesterday was my POTSaversary. Eight years ago, after an arduous tilt table test, I was diagnosed with postural orthostatic tachycardia syndrome (POTS). I knew little about POTS, and even less about living life with a chronic illness, and there weren’t a ton of resources at the time. In the years since that fateful day, I have learned a lot about treating and managing an illness, but only after a lot of trial and error. I did so many things wrong in the beginning. So, in honor of my 8 year POTSaversary, I’m sharing the 8 things I wish I could go back and tell myself after being diagnosed.
1. Whatever you feel, emotionally, is exactly how you should feel. There’s no right or wrong way to feel. There’s no manual on how to handle the news that you may be in pain for the rest of your life, or that simple tasks like standing or showering or eating may never be simple again. Yes, it could be worse. But it could be better, too. You’re allowed to mourn everything you’ve lost.2. People will say insensitive things. They won’t understand the dynamics of POTS, or the frustration of having an invisible illness, or inconsistency of symptoms. You will be told that you’re faking it, that it couldn’t possibly be that bad (when in reality it’s usually worse), that if you would just get some sun/eat kale/pray/exercise/fill-in-the-blank, you’d be better. You might be shamed for using a legal disability placard or a mobility aid. Ignore it. The stares and comments stem from some issue that person has – it’s not about you.
3. Be kind to those who say insensitive things from a place of love. This may seem inconsistent with #2, but there is a difference between someone who tells you that your problem is one of laziness, and a loved one who tells you she read in numerous articles online that exercise can help your illness. Both may be wrong, but don’t overlook the part where someone who loves you spent hours searching the internet for something that can help you.
4. This isn’t your fault. Nothing you did or said caused this, or could have prevented this. I spent the first couple of years wondering if I had eaten healthier, handled stress better, not lived in Europe for two months, treated people with more kindness, or just been an all-around better human being, none of this would have happened. I wondered if I was being punished.
You didn’t do anything to deserve this. Some things just happen, without rhyme or reason.
5. You don’t owe anyone anything. You don’t have to keep seeing a doctor that isn’t working for you, even if s/he is a renowned specialist. You don’t owe that judgmental stranger an explanation of why you’re allowed to park in a handicap space. You don’t have to stay in a bad relationship, whether it’s romantic or platonic, because s/he has had to “put up with your baggage.”
If something isn’t working for you, break up with it. You deserve to be happy.
6. Join a support group, but don’t lose perspective. With the advent of social media came new avenues of connecting with others in similar situations. Chances are there’s a Facebook group or a scheduled Twitter chat for people with your illness. Support groups, whether online or in person, can be great resources for connecting with others, finding good doctors, and getting recommendations for pharmaceutical and non-pharmaceutical treatments.
But support groups can be depressing, too. People can be quick to judge, or to misread a negative tone into a response. When you see the same people posting, day after day, with worsening symptoms and declining health, it starts to feel like you’re doomed. But some people do improve – they’re just spending their free time out in the world and not on Facebook. My symptoms have vastly improved since I was first diagnosed 8 years ago, and as such, I’m able to hold down a job, play with my crazy dog, help my father-in-law, go visit my mom, meet up with friends occasionally, and pursue hobbies. I don’t post in the FB groups much anymore because I don’t always have the time. I still like to check in on some of my instagram friends and provide supportive comments on their posts, but the majority of my posts are about my dog, because he’s handsome and infinitely more enjoyable to discuss than my symptoms and treatments.
7. Find a good doctor. You’ll go through some bad ones, some mediocre ones that actually know all about your condition, and some great ones that don’t know about it, but are willing to learn. You’re allowed to see other doctors, get second opinions, and fire doctors that aren’t doing it for you. It’s not an exclusive relationship. If you’re not sure where to find a good doctor, ask in the aforementioned support groups.
8. I would love to tell you that it gets better, but the truth is it might not. It may never get better. But you get better.
“I did then what I knew how to do. Now that I know better, I do better.” – Maya Angelou
Friends, what advice would you give someone who was just diagnosed?
Smell ya later.
– Linds
Happy Potsaversary! Mine is coming up next month! Time flies when you aren’t having fun…but it goes by even faster when you are 😉
This is one of the best posts on POTS I have seen! I will add a few things. Social
Media and chat groups are great when faced with a chronic illness that many docs aren’t familiar with. However, I find them to be negative. Many want to “one up” you with how much worse they are then you. It’s not a contest you want to be in and not one you want to win. I just personally can’t deal with it. Many also want to give out advice that goes against common sense or your doc’s advice. (This is just my opinion. Take it with a grain of salt.) Some love them and some don’t. I live in a rural area and know the isolation.
I also find you can fire a doc, and you may need to fire a friend or two. If your friends doubt you, cut them loose. My best friend of over 15 years doubted the severity of my illness. I lost my career that I went to school for years over, my driver’s license and so much else over. I wasn’t faking it. If she had taken the time to really talk to me about it or even research it a little, she would have known. She met someone else with it and they weren’t as bad, so I couldn’t be either. This part was one of the most painful lessons. You see the people doubting you. Many doubt, but few will help. Be prepared.
One thing I gained from being sick is strength. My body is not strong, but I am so much stronger mentally and emotionally. I have perspectives that I didn’t have before. I see things differently and see what is important and what isn’t. I am grateful for that!
These are all right on! I agree with you about social media. I’m fortunate to live in a big city where it’s easy to connect with other people with POTS. I find in person meetups to be very helpful, but I don’t visit online support groups often. I totally agree that it often seems like a competition of who has it worse (a competition with no winners, obviously).
I’m so glad you mentioned gaining strength! I think I have also become more compassionate, more understanding, and less judgmental. I’m grateful for a lot of things in my life and have gotten much better at expressing it.
Thanks for sharing your thoughts, Devon!
Great post Linds! x
Thanks, Jak!
Great post! I am terribly behind in blogging this year, been a rather rough one, but I’m shaking the dust off and trying to catch up. So here I am at your blog today and finding it so incredibly relatable, as well as similar to my post later in the week. giggling… I want you to know I hadn’t read yours first and wasn’t copying!! So many of us blog about our most prominent diagnose but so much of the advice covers so many different illnesses. I’m newly diagnosed with POTS so I don’t really have any POTS specific advice. Social media is a little like walking through a field of landmines. I found several groups in the beginning but the negativity was too much for me and the infighting…wow, I couldn’t handle it. So I went the IG route and tried to find other spoonies. Even still I have over a 100 people blocking me! 🙂 I don’t have any idea why, guess they must not like my doodles :)! It’s an interesting and new world out there in social media. But boy am I thankful for it because I’ve learned an immense amount about my illnesses, and met some awesome people. Thank you for sharing your tips, they are so helpful to newly diagnosed people, but also great reminders for those of us who have been traveling along on this journey for many years now.
No worries – I didn’t think you copied my post 🙂 Other than both using the number 8, they’re pretty different.
I like connecting with other spoonies on IG, too. I feel like it’s a much more positive and supportive environment. I can’t imagine anyone blocking you!!! I love your watercolors – they always make me smile.