Invisible Illness, Explaining Dysautonomia
I think all of us can agree that one of the most difficult parts of having dysautonomia is the fact that many of us don’t have visible symptoms. Unless we are in a wheel chair, most people can’t see anything wrong with us. You can potentially show them your purple legs or pale complexion, but this doesn’t really seem to phase people. Purple extremities from blood pooling and paleness just don’t display the severity of our symptoms. People can’t understand the severe symptoms such as exhaustion, brain fog, and so forth that can make our lives severely debilitating.
Recently my friend Dillon had his ACL replaced. He has been wearing a full leg brace for the past two weeks and acts awfully like a person suffering from dysautonomia. He can’t make it up stairs, he is tired after walking with crutches for short distances, he isn’t as sharp as usual (probably a combination of pain killers and tiredness), and literally acts just like a dysautonomia patient. The difference for him is that everyone can see the leg brace and everyone can sympathize with the difficulty of dealing with crutches.
While all the metaphors for dysautonomia are great. From an hour glass with sand seeping to the bottom to numerous others, when you really want to let someone relate to the way they are feeling, maybe use the example of a person with a leg injury on crutches. Maybe it’ll help paint a clearer picture for people and help them understand what you are going through. Have a great way of explaining dysautonomia? Feel free and post! Hope everyone is feeling well!
-Tyler
Tags: dysautonomia, invisible illness, postural orthostatic tachycardia syndrome
