I originally wrote this post for Lindsay’s Blog (she also has POTS, and did this guest post for me recently on her morning routine… make sure to go check out her blog after you’re done with this post!), but decided to re-post over here for all of you! Click on this link to see the original post and comments. Thanks so much to Lindsay for letting me guest post 🙂
Thanks so much to Lindsay for asking me to guest post today! I also have POTS; I was diagnosed a little over 10 years ago, but have been “sick” for almost 11 years now… just typing that leaves me feeling a bit sad. Living with a chronic illness makes life interesting, and I wish it came with a “how to manual” for family and friends. So here are five things I wish that people could understand about having a chronic illness:
I can be smiling, laughing, and having fun, and feel sick and in pain all at the same time. It’s easy for people to say “well you aren’t acting sick” and ignore the reality of what those of us with chronic illness are going through. If I acted in line with how I felt, I wouldn’t be the cheery, driven person that I am today.
Most of the time, we don’t mind talking about it. Quite honestly, I’m really happy to talk about POTS, and try to help people understand it better. I have a huge amount of appreciation for the friends I have who have taken the time to get to know my experiences, and help support me through them.
With chronic illness, my day is pretty much 100% different than my friends. From the time I wake up to the time I go to bed, I’m constantly thinking and adjusting what I need to do based on my experiences. I stand and talk to people and have to work on getting my blood to not settle too much in my legs to avoid passing out. I carry salt with me so I can take it the moment I start getting dizzy. I count ounces of water to make sure I’m getting enough. I don’t leave the house without making sure that I have multiple meds with me. These are just a few examples of things I constantly have to do on top of what the average human does in living. (This post might give you an idea of what my days are actually like).
Requests that are “little” might actually be pretty big. With a chronic illness, experiences can be magnified, so what seems little to you might actually be a really big deal. It might seem “ridiculous” or “dramatic”, but we usually know what we need. If you have questions, be open to the discussion and explanation, and just ask.
Peoples’ experiences with the same illness could be vastly different, so comparison is generally unhelpful. My life with POTS can look pretty different than someone else’s with POTS, and that doesn’t mean my POTS is “better” or “worse”. Getting to know each individual’s specific case is definitely important!
Obviously there are SO many more things about living with a chronic illness that I wish people would understand, but these are a great start. If you’d like to know more about my life with POTS, check out my link here. If you’d like to know more about living with POTS, check out my post on “30 Things You Might Not Know About My Life With POTS”