Tuesday, June 16, 2015

5 Things I Want You to Know About Me and My Disease

Living with a rare and incurable disease certainly has its challenges. For example, for the past 15 days my left side has been what I call 'dead'. Meaning, it is very difficult to move. I kind of hobble around the house, then at work for 10 hours until my left side finally decides to cooperate with the rest of my body. That doesn't stop me from living my life and doing what I love to do: help students in higher academia. So with that I wanted to talk a little about living with an auto-immune disease and some things I've noticed in the past 9 years of dealing with it.

Here are five things I would like you to know about me and living with a rare auto-immune disease.

  1. If you're sick and you know that you're sick, please stay clear of me. There is a 90% that I'll catch your 24 hour bug. Except, when (and I say when, because eventually it will sneak up on me) I catch your bug my body turns against me and it becomes a 2 week bug. Not only will I most likely end up in the ER, hospital or doctor office I will be missing 2 weeks of work that will ultimately go on my annual performance evaluation.
  2. Not all disabilities are visible. Please refrain from speaking any negativity because I parked in a handicap parking spot. That handicap placard hanging from my rear view mirror is registered to me and has been for the past 9 years. I was given the handicap placard because I am disabled, not because I just want to park closer to the entrance.
  3. One of the symptoms of my disease is fatigue. Extreme fatigue. I can't explain it, my neurologist can't explain it and WebMD can't explain it. As the day progresses my level of fatigue hits a record high around 7:00pm. Resting does not improve the feeling of not being able to complete a simple task. There are weekends where I just lay in bed all day unable to physically get out of bed without exhausting myself. (Sound cushy, right? Wrong!) It's miserable, but you learn your body and your limits.
  4. "But you don't look sick." Thanks! So tell me... What is a 'sick' person supposed to look like again? Do we have to be in a wheelchair to be 'sick'? While I appreciate your compliment of not looking ill, unfortunately the reality is I am.
  5. I do not mind telling you about my story of diagnosis or even talking to you about my disease, but I do mind when your questions begin to become too personal. Example: SSI/SSDI, sex life, marriage, mental health and therapy, finances, et al... They are all irrelevant when it comes to my disease.
It is okay to ask questions and to be curious, but please, please keep in mind that everybody is different when it comes to coping or dealing/managing their disease. We're all human-- let's treat each other the way we want to be treated one smile at a time.


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