31 facts about my invisAbilities

 
 
 
 
 
 
 
 
 
 
 
 

 

By Julie Harmgardt, InvisAbilities, Founder and Chair

Today, Disability Awareness Month comes to a close. Over the past 31 days, I have had the privilege of being part of several disability awareness-raising initiatives – and I have thoroughly enjoyed every minute of it. We’ve discussed a wide variety of topics: disability policy, accessibility, lifestyle management, the dynamics of disability in relationships, stereotypes and stigmas… It has truly been a pleasure to engage in conversation about these issues that are, for the most part, not included in popular conceptions of the word “disability”.
 
What does “disability” mean? I really can’t say. It’s a unique, intimate experience… and thus, has multiple meanings. The word “disability” is much more than mere letters scrawled haphazardly across a wrinkled page. “Disability” holds vignettes of our lives – our moments of joy and hope, sadness and frustration. In honour of Disability Awareness Month, I wanted to share some fragments of my life, as an individual living with hidden, chronic illness.

31 facts about my invisAbilities

1. I used to run 10km, six days a week before getting diagnosed. I would give anything to feel that adrenaline rush again.
2. No, I’m not too young to have arthritis … I really wish I was.
3. Just because I get good grades, participate in extracurriculars, and have a social life doesn’t mean I’m faking it. It just means I’m medicated and a bit too stubborn.
4. I have to wake up at 4:00am each day to take one of my medications.
5. Yes, I’ve tried it all … naturopathy, physiotherapy, acupuncture, osteopathy, etc.
6. My brother and I used to play tennis for hours on end.
7. I experience baseline pain and fatigue everyday.
8. Just because I’m smiling doesn’t mean I feel great. And just because I’m at the gym doesn’t mean I’m not hurting.
9. It makes me angry when people take their health for granted and don’t treat their bodies with respect.
10. Even though I’ve stopped asking, “Why me?”, I’m still angry that I’m sick.
11. A quick hug or “hello” text can go a long way in making my day better.
12. I worry about the future. Will I put my career above my health, or my health above my career?
13. My medication and therapy treatments cost over $6,000 per year.
14. It bothers me when people equate my joint pain to having the flu. There’s no quick fix.
15. No matter how much sleep I get, I never feel rested. And if you notice I’m quiet, don’t always assume I’m mad or something’s wrong. I might just feel drained.
16. I feel awkward taking the elevator for one flight of stairs. I feel even more embarrassed when someone says, “Don’t be lazy, let’s take the stairs.”
17. I used to ski all winter … Lake Louise and Panorama are my favourites.
18. I get really frustrated hearing, “But you look great!” and “You’re strong, you can do it!”
19. Having arthritis in my hands means my signature has turned into chicken scratch and I have to use a computer to write my exams. Some days I have trouble with buttons and zippers.
20. I’m offended when people joke that my medication has street value.
21. When I first became ill, I was really surprised by the people that didn’t stand by me.
22. Weather, stress and lack of sleep trigger my flares.
23. I’m scared that when I’m traveling overseas my medication will get confiscated.
24. Since getting diagnosed, I’m always cold. Even on the beach on a hot summer day, I still feel chilled and usually wear a fleece sweater … quite the sight for those that don’t know me…!
25. My invisAbilities have brought me closer to my mom – if that’s even possible.
26. I have become very good at advocating for myself with boorish medical professionals.
27. I never know how I will be feeling … each day is different. And I’m really impatient on bad days when everyday things take me twice as long to do.
28. When I first got sick, I spent hour upon hour at the Queen’s medical library, pouring through academic journals in an attempt to figure out what was wrong with me.
29. I wonder why people are so skeptical of illnesses they can’t see. You can’t see love. Does that mean it doesn’t exist?
30. I am passionate about breaking down misconceptions surrounding hidden, chronic illness.
31. My invisAbilities don’t define who I am … I am still me: independent, capable, intelligent, caring. My illness is invisible … I am anything but.