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. Initially they were around $160, now I found the same one for $69.99 at Walmart. 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
- What are the Ehlers-Danlos Syndromes?
- VIDEO: Mayo Clinic - Ehlers Danlos Syndrome: Hypermobility
- VIDEO: What is Ehlers-Danlos syndrome? - Educational Video
- VIDEO: Dysautonomia Support Network - Dysautonomia Explanation
- VIDEO: What is POTS? Dr. Grubb - DI
Patient Perspective - What Ehler's Danlos is Like
- 29 People With Ehlers-Danlos Syndrome Explain What It Feels Like
- Open Letter to Those Without Ehlers-Danlos Syndrome
- Inspire - Discussion board
Patient Perspective - What POTS is Like
- VIDEO: Mayo Clinic - Living with POTS
- VIDEO: Paper POTS: Living with Postural Orthostatic Tachycardia Syndrome, Chronic Illness
Articles/Blogs - Helping you explain your chronic illness to others
- 6 Tips for Explaining Your Chronic Illness to a New Friend
- Explaining Your Illness To Friends And Famil
- “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?
Things to Share with Friends/Family
- The Mighty: When You Love Someone With Postural Orthostatic Tachycardia Syndrome
- BuzzFeed: 10 Things People With POTS Are Tired Of Hearing
- Dysautonomia Awareness
- The Mighty: 17 Things People With Ehlers-Danlos Syndrome Wish Others Would Stop Saying
- 15 THINGS NOT TO SAY TO SOMEONE WITH A CHRONIC ILLNESS OR INVISIBLE ILLNESS
- BuzzFeed: 16 Things Healthy People Say To EDSers