Worrying about my future

Sharon Noseworthy had to leave her career as a Human Resource Counsellor due to retinal disease. Currently, she advocates for support and rehabilitation services for Canadians with vision loss, hoping to stop unnecessary hardships. Sharon has also written a compelling piece, Fear, about dealing with Polypoidal Choroidal Vasculopathy on the MD Support website.

I have an incurable, untreatable chronic illness, a retinal disease. Despite long wait times for appointments, hours spent in the waiting room and too little time with the doctor resulting in no time for questions, I believe my eyes receive excellent care. I did worry about the cost of the expensive drugs used to treat the eye. I was already spending thousands of dollars on tools to assist with daily living. 

To date, no treatment, no drug has helped. I recall the day the retinal specialist said, “We are sorry but there is nothing further we can do for you.” I understand that there is nothing that can be done to treat the eyes, but what about me! 

There was, and is, no offer of rehabilitation, no offer of counselling, no evaluation of my needs and arrangement for required services. I left the clinic feeling helpless and hopeless. I went home not knowing how to deal with living with low vision. With no continuum of care, my health has deteriorated. I became acutely ill.

My family doctor monitors my health, including side effects from vision loss. With, or without reports, she provides excellent care. The retinal disease is still active so specialists continue to monitor my eyes. However, what I truly need are comprehensive vision loss rehab services. These services do not exist. As a result, I am not able to live independently. I worry about my future. Will I, like so many others, have to prematurely enter a retirement or nursing home?