I was recently watching an episode of The West Wing where Jed Bartlet (US President) is unable to move his hands due to his MS. Naturally, panic struck those around him. Of course people would panic. If someone suddenly couldn’t move their hands and the paralysis was making its way through their body you would panic. For most people this is a scary concept that they wouldn’t know how to manage. In this panic it was asked who they should be calling. The Surgeon General simply turns to them and says:
For an MS patient this is the equivalent of a headache.
I mean, who would you want us to call if you had a headache?
This single remark struck me. I could relate to this. Friends and family could relate to this. Anyone with a chronic illness can easily relate to this. Over time we come to accept our symptoms as part of our everyday life. For me it’s perfectly normal to have a multiple headaches a week, daily back and neck pain, frequent muscle pain and constant pain from fatigue. However, if any “normal” person felt any of those symptoms it would often be a cause to call in sick and visit a doctor.
I once saw friend of mine (also with a chronic condition) take of her shoes after a night out only to reveal a heavily swollen, black foot. For anyone not aware of her condition, this would be a huge concern. But for her, it was just the price she had to pay for hitting the town in heels.
Those of us living with invisible illnesses will have days where our symptoms become physically visible and this can cause some alarm for those around us. This is why educating friends, family and coworkers of our condition is so important. If you do suddenly collapse, have a seizure or become paralysed it’s important that those around you know how to handle themselves. It’s not so much about making sure they’re trained to handle these situations from a medical perspective, but more about making sure they know not to panic as this is of no help to anybody.
So talk and listen to those around you. Explain what is deemed “just a headache” to you. If you see me and I suddenly can’t move my neck or back or if I faint or become unsteady of my feet – don’t be alarmed…this is just my “headache”.