Guilt...

Guilt. I think this is one of the biggest reasons that patients who suffer from an invisible illness pretend to be fine. I know that Meghan pretends to be fine because she hates to miss out - she loves doing things. But it wasn't until I read her post on how she felt during the first 2 years of our search for answers, that I realized she felt guilty, too. She felt that if she didn't feel good, we all missed out on fun things. We used to do a lot of traveling, which became near impossible when her symptoms began to take over. We used to go to a lot of activities for school, which also became hard. Loud noises, flashing lights, and overwhelming activities can bring about or make symptoms worse. Leaving her home to rest also brought about guilt.

She wrote about how the therapist we saw made her feel like it was her fault that our family was struggling. That she needed to stop acting out and try to help herself. How awful. Awareness and understanding of POTS is key to knowing that she is not doing it on purpose - early on we just didn't know what was happening. Mayo Clinic estimates 1 in 100 teens are affected in some way from POTS - just think what awareness will do to help others who may not know.

A good article to read from our Articles page on guilt and invisible illnesses - "What I Want to Tell Patients as a Medical Student and Fellow Patient..."