When Your Friends/Family Just Don't Get It.
I've found that my friends and family try to be understanding when I explain my conditions to them. But there are still things I could work on when it comes to helping them understand.
Shortly after my POTS diagnosis, I purchased a Polar Heart Rate Monitor (with chest strap because they're more accurate), they've really dropped in price since I bought mine 4 years ago. I bought one because I wanted to know what was triggering my symptoms (exhaustion/tachycardia/dizziness) so I could figure out how to lessen them. The chest strap is NOT meant to be worn all day...the electrodes on the chest strap will wear out quickly if you do (I learned this the hard way). Polar will replace it once or twice, but after that, you'll have to buy a new chest strap.
Wearing my HR monitor helped friends and family to see what my heart rate was doing in real time. This was the biggest thing that helped people understand my POTS symptoms (that I needed to sit down, slow down, or that I was having a hard time). Despite being a broke college student, this HR monitor was worth every penny. I was able to track my symptom triggers and my family members finally had 'proof' of what they couldn't see happening.
Here are some basic resources that helped me explain what chronic illness is like:
The Spoon Theory written by Christine Miserandino
It isn't a perfect explanation but it does help healthy people begin to understand what we're going through
The Mighty: The Spoon Theory Gave People the Wrong Idea About My Illness
Over time, I found this blog post to have some really good points
Technical/Medical Items to Share
Patient Perspective - What Ehler's Danlos is Like
Patient Perspective - What POTS is Like
Articles/Blogs - Helping you explain your chronic illness to others
“I Have a Chronic Illness and This is What I Want My Parents To Know”
When chronic illness strikes: Tips on talking to family and close friends
How Do You Deal With Relatives Who Don’t Understand Your Chronic Illness?
