MOG-Ab Disease May Be Invisible, But I’m Not

By Craig Dickson

Every morning when I open my eyes, the world looks different. I don’t mean that metaphorically or philosophically, I mean that literally.

When I go to sleep at night, I don’t know what the morning will look like. Will the colours be the same? Will my distance or close vision be fuzzier? Will there be black flashes, translucent strings or places where my vision seems to fold in on itself?

I don’t know how I will feel when I wake up, or what I will feel. Will my back be ‘buzzing’? Will my feet burn? Will my ears start squealing and squeaking? Will today be the day that everything goes bad and my illness does even more severe damage? It’s exhausting, and this is before I have moved from the bed.

If I woke up with any of these things happening eighteen months ago, I would be calling in sick and going to the hospital. Instead, like many others with chronic diseases, I get up and get on with the day.

I work and I play. I smile, laugh, cry and fret. I break through personal mental and physical barriers. I’ve ridden bigger and heavier waves in the past eighteen months with my illness than before it all started. I have pushed my body to heal and manage, and my outlook and approach to life has been forced to shift. I am stronger and more capable than I ever imagined I could be or would have to be.

Every day isn’t just a matter of waking and getting up. Each morning requires a form of effort and energy expenditure unknown to me before this illness started. Each action of each day is a form of depletion, and life is now a balancing act of knowing I want to do something in three days’ time, so I have to ‘save up’ for that by missing out on other things.

Some people can see the challenges, some cannot. I try to manage without showing too much, which has been both to my benefit and detriment. I haven’t found a balance.

Those with my illness and similar autoimmune diseases are fighting a daily battle that many don’t know about and will never see or understand. Others are too. There are many chronic diseases, and mental health challenges are often invisible as well. Some people see my physical wellness and wonder how I can be sick.

The saying that goes something like “be kind, because you will meet people fighting battles you know nothing about” has never been more accurate. I am now one of those fighting a daily battle most will know nothing about.