July 25/23
🍁 VHL Dialysis No Cure
I used to automatically think and feel that all cab drivers looked down on me because I was ‘sick’ and ‘took advantage’ of government benefits. Also, I just looked like someone who could possibility fit a stereotypical profile *.
However, after a couple of years, I started to feel less frustrated and more assertive (or honest) in these situations. For example: I believe that clarifying some simple facts about my disease (kidney, VHL and my whole self) inspired an “Oh … I didn’t know that!” moment.
For example: if someone on long-term dialysis just stops, then they will die eventually (days or weeks) **. It’s not a ‘cure’. In addition, I feel hurt (and angry) sometimes when I’m the object of misinformation or stigma about my ‘kind of people’.
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* Adult VHL patient, with lots of interesting personal and professional experiences, from Toronto
* For the last 4 years, disability benefits (Ontario Disability Support Program or ODSP: ‘welfare’ for sick people) has paid for 3 days of 2-way taxi rides per week for dialysis
** Kidney Foundation of Canada
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