I have always spoken out loud and to anyone who was curious about Huntington’s disease. I have never hidden my health, my fate, my family’s struggles or my own story. I admit though for the past few weeks I have wished for this “life I’m stuck with” to just go away. This disease is starting to affect my life negatively and I am only 34-years old.
Now, keep in mind that of course I have childhood trauma that affects some of my adult behavior, but there are those pesky little Huntington’s symptoms making an appearance as well.
I worked harder than most people have to, and that started about six years ago after a spinal lesion left me barely able to hold my newborn baby, let alone walk up the road. I conquered that though because I am stubborn. Being paralyzed? Nope, that wasn’t for me! With hard work, diet, exercise and patience, recovery took about four years. I’ve been rollerblading, snowboarding, hiking, whatever I can do physically since then because I CAN.
The ironic twist is that while I have gained back so much physical ability, now I have HD slowly taking away my emotional state from me.
I know this struggle will never end, but you would like to think that those in your life, whether at home or work would empathize enough to work “with you” instead of against you. That’s where we get into the meat of this article, the topic of discrimination and human rights. Watch the video explaining my current situation below.
I honestly never wanted to have to write an article like this one, however, my mood swings, my stress level and negativity overflowed into the workplace. With good reason. But that’s not the point. The point is, it happened. And to address it, I told management everything about my past health with the spinal lesion, right up to the day-to-day crap I go through with Huntington’s disease. I was under the impression they were going to work with me regarding this new information. That was not the case, as it turned out.
That brings me to human rights. I hope you watched the video, because it explains everything behind the scenes leading up to the day I was fired from my job, with no reason for dismissal.
I cannot speak for all of Canada or elsewhere, but in Alberta the Human Rights Commission protect people from discrimination under specific areas such as age, gender identity, mental disability, physical disability, colour, religious beliefs and a few more. They make it pretty easy to file a complaint if it is necessary to do so, albeit, it is still an embarrassing and stressful document to be filling out.
My goal is not to point blame, but rather to raise awareness and simply request changes be made as a whole in companies and how they handle employees with stress, mental health issues, physical health issues etc. I believe better education and accessibility to counseling/therapy services within companies is needed and would help provide a better quality of life for employees.
Simply put; it’s time for change.