Today is rare disease day and Jeans for Genes day for Mitochondrial Disease awareness. I wanted to do this cool fashion post for you guys to support Jeans for Genes day but I thought that instead of doing that we could just get really personal and take a trip down memory lane. Before a month ago I would never have been able to do this, but today I think I’m a little bit stronger than I use to be. So I hope you will read my story and resolve in your heart to not judge people with invisible diseases, to open your arms to help raise awareness and ultimately just to show love.
If you’d rather watch my story than read about it check out this video I recorded back in 2013 below where I share my full story and my goals to raise awareness:
It seemed that life was against me from the very beginning of this ordeal. We couldn’t afford speech therapy at first so my ability to form words disappeared. When we finally were able to see a speech therapist her eyes watered as she told me “she’d never seen such a young person dealing with such a horrific ordeal.” She worked with me three days a week to help me find my voice again. First, it was a little shaky, then it wobbled and like a new born deer it slowly gained its strength and words began to form. Sadly the situation was completely different for my legs. I progressed from holding on to my father’s strong arms to a walker then finally a wheelchair. I realized quickly that life would not be easy.
It seemed I saw doctor after doctor during the first few years and not all of them were nice. You see when you have a rare disorder some doctors tend to see you as the problem before investigating further. This was a roadblock to getting help and some of the things that were said to me still haunt me to this day. On top of that companions that I once thought to be close friends left me alone to fight this battle. I don’t hate them but I only wish they could understand how important it is to stick by someone when they are facing a health crisis. I pray they will never have to go through what I’ve been through.
People can be kind but they can also be cruel. Countless times I have been accused of lying, I have been ignored and mistreated by not only people I meet on the street but doctors, people we are trained to trust and value. I cry and have terrible anxiety now when it is time to go to the doctor. I just fear having one more unkind word spoken to me that might move me to end my suffering. Something I was so determined to do in the early stages. But my family and a few close friends kept me sane.
Hearing their constant reminders pushed me to move past the why me attitude and truly find something I am passionate about. For me that is raising awareness for the disabled community. The media also needs a wake-up call. Women and people in general with a disability are more than their condition. We are not incapable human beings. Instead, we are smart, fearless and determined people who just demand the acceptance and fair treatment our peers receive.
Thats why I wrote my story today on rare disease day, to help raise awareness for people with visible and invisible disabilities. As mentioned above I would implore all of you to reach deep down into your heart and show compassion and understanding when you hear of someone suffering from a condition you are not familiar with.
To doctors, I beg you to listen to your patients. Don’t brush them off or place blame on your patient. Yes, you are the doctor but you do not live in our bodies. Please listen to us when we tell you how much pain we are in, how it hurts to get out of bed, how we suffer with aches and pains. We come to you for help that is it. Please do not damage our trust in you by using harsh words or taking an accusatory tone. Work with us so that we may live the best life possible. That is all that we ask.
Thank you for reading my story and I hope that you will take the time today to learn about various rare disorders by visiting https://www.rarediseaseday.org . Also, Take a look a video created by the kind people that run the above-mentioned website.
Do you have a rare disease? Share your struggles in the comments or tweet me at @sweettartbeauty . I’d love to hear your stories.