I have spent years writing letters, working with experts, and appealing decisions to help reveal the many flaws in our disability programs. What remains the most interesting component is it is always confirmed that I do indeed have a disability. But nevertheless, there are always criteria that I still don’t meet. I have spent hours working on these applications and trying to find ways to find assistance.
In the last year I have been off work and school, I reapplied for all of the programs I had previously been denied from prior to me working. Unfortunately once again, no support came through. This was a really big obstacle for my husband and me because of my lack of income and we no longer had health benefits.
I can’t tell you how many people in these programs have said to me,
“Unfortunately, you are one of those people that fall through the cracks”.
Great, awesome, just what I wanted to hear.
My question is “Who are the people responsible for writing all of these programs”.
Yes, I may have a rare disease that has some unique needs but the bottom line is I am trying to make my life work and it just so happens that I need a little help with this so called disability.
So we went another year without support, and I am feeling stronger and hopeful to start working part-time again. I am optimistic about the routine I have created in my home life. I realized that prior to this time off I tried to fit my health around my work and that clearly didn’t work. Now I know my health is the main concern, and work is an added bonus to my life.
This brings me to my next issue with a disability and trying to work with DIGITS. I have always been upfront about the health needs I have because I am an honest person. The results of my honesty are not a lot of job opportunities pan out. So new plan, I have decided to be self-employed so I can work around the many health obstacles I continue to have. Having all of these health needs and still battling symptoms is my better, going back to live without any symptoms isn’t realistic right now. And more than that, I like to work; I like teaching and doing research. My teaching and research are both passions of mine.
I am hopeful as I continue on my journey I will continue to find people who are compassionate and mindful of someone with such an invasive chronic illness and willing to be creative about the supports available for those with a disability.
Your Woman with DIGITS