Helping Others to Understand
Understanding an invisible illness is hard. Maybe as hard as handling some of the symptoms. I think if you haven't witnessed it, you may not believe it - witnessing the behind the scenes stuff. The nausea or extreme fatigue at the end of the day. It's hard when someone sees a moment in time of happy and smiling and says that things must be better. This article posted on the Articles tab of our webpage about Crohn's disease is a good one - No One Understands My Struggles With Crohn's Disease. Meghan does not have Crohn's disease but there are some overlapping symptoms, feelings, and common reactions that patients encounter. POTS is now thought to be auto-immune, like Crohn's, in a lot of patients. When I read the article, it made me think of discussions I have had with others. About how we should try this supplement or eat certain foods or not eat certain foods or to just find the right doctor or find the right pill.
Another article, POTS: The Teen Disease You Probably Never Heard of, is one that gives some good, every day examples of how it feels to have POTS, it says:
“To imagine POTS for yourself:
1. Fast for 24 hours
2. Donate a pint of your blood
3. Go home and turn your thermostat up to 100 degrees
4. Stand motionless
5. Enjoy the symptoms,” says Dr. Jeffrey Boris, a pediatric cardiologist at Children’s Hospital of Philadelphia.
For people that I talk to, I tell them to imagine feeling car sick every day and having to go on like they are fine. Or having a stomachache after every meal. The POTS patient often pretends to feel fine because no one likes to hear about how they don't feel well AGAIN. Meghan has come a long way in her recovery since we began her auto-immune treatments. But she still has daily symptoms that she deals with - mostly stomachaches, occasional nausea, and fatigue. Some dizziness after sitting for long periods of time and anxiety caused by inappropriate adrenaline release.
Getting others to understand that these symptoms vary in intensity and occurence is very hard. There are a lot of things that trigger symptoms for Meghan. Body position change or sitting for long periods or standing for long periords. Or having to sit down and stand up repeatedly. Stress seems to be a big one. Flashing lights, loud noises and other things that over stimulate her nervous system are also triggers. Overdoing it one day, often leads to a the next day being a day of recovery. We are hoping that the more friends and family know, the better they will understand.
Mayo clinic estimates that 1 in 100 teens will struggle with POTS. Awareness is key.