Michelle

I’m M, and I’m the founder of Caring for Corneas. I’m 29 and I live in Ottawa.

In 2018, a dermatologist prescribed me isotretinoin to treat my moderate acne. A few months into the treatment, I suddenly developed unbearable eye pain. The medication had damaged my eyes’ glands and nerves, resulting in dry eye disease and corneal neuropathic pain. 

I became disabled overnight. My eyes burned and ached from the moment I woke up to the moment I went to sleep. My symptoms were so severe that daily, normal activities were difficult and enormously stressful. I dreaded having to go into stores, where the bright artificial lights and circulating air caused my eyes so much pain. I no longer felt safe driving, as I couldn’t go longer than ten minutes without using eye drops, and the street lights and car lights were unbearable to my eyes. Even looking up and making eye contact with people became difficult and painful, as I couldn’t hold my eyes open for as long as I used to be able to. I began to dread having conversations with people, and started to withdraw socially. I distanced myself from my friends, as I felt I couldn’t relate to them anymore. I no longer wanted to leave the house, as going anywhere else and doing anything was sure to increase my pain and discomfort.

I could no longer use a computer without my pain levels increasing substantially. I was halfway through my M.Sc. program when this started, and I relied entirely on computer use to conduct my research. I considered dropping out, something that a straight-A student like myself would have never fathomed. I stopped dreaming of the careers I envision for myself, as I didn’t think I’d ever be able to work full-time again.

Within a few months, I developed severe depression and anxiety. I cried for hours on end most days. I mourned the life that I’d had, and I was terrified of the future. There are no words to describe the mental anguish that you feel when you believe the rest of your life will be painful and miserable. I didn’t see the point in continuing to live, as I was in so much pain and so limited in what I was able to do. The things that used to make me happy were no longer enjoyable, instead bringing me pain. I didn’t have anyone in my life who could even begin to understand what this was like, and so I felt isolated and alone. For over a year, I contemplated suicide nearly every day.

Doctors’ appointments were confusing and disappointing. The first optometrist I saw diagnosed me with dry eyes, but he said my case was mild and would be easily manageable. His treatment plan did not help. I proceeded to see another three optometrists and two ophthalmologists, none of whom were able to help improve my symptoms. One of them, noting my pain levels and lack of improvement with treatments, suggested I may also have nerve damage in my eyes. This led me to discover the existence of corneal neuralgia. I joined an online support group, where I received a recommendation for an ophthalmologist one hour away from me who had some experience dealing with this disease. She helped me get funding to go see the leading corneal neuralgia specialist in Boston, the closest place that has the technology to properly diagnose this disease. In Boston, the specialist confirmed my diagnosis, and got me started on appropriate treatment plan.

Since undergoing appropriate treatment, I have made significant progress and I am more functional in daily life than I used to be. But I still have a long way to go. And it continues to be an expensive journey, as OHIP does not cover any treatments for corneal neuropathic pain. Over the last several years, my spouse and I have collectively spent over $30,000 in treatments, products, and procedures to try to help my disease. Spending this kind of money on healthcare is virtually unheard of in Canada.

If I did not have my spouse, who has a stable job and a good income, I would not have been able to afford even a fraction of the care I need to manage this disease. I feel very abandoned by Ontario’s healthcare system, and any pride that I had for our country’s “free healthcare” has vanished.

Getting a disease like this changes you forever. I feel like only a shadow of the person I once was. I cannot be carefree. Everything I do in life at every moment revolves around my eyes. I’m still unsure what my future will look like. But if there’s one thing I’m certain of, it’s that I will not allow the Government of Ontario to leave people suffering from this disease simply because they can’t afford the care they need.

It’s time to make change. And you can help.