Myalgic Encephalomyelitis (M.E) can have some weird effects on the body, from the painful swelling of lymph nodes to the sensation of bugs crawling on your skin. It can also exacerbate existing medical conditions, but when I was diagnosed with M.E all those years ago, I certainly never expected eye surgery to be on the cards.

Let’s start at the beginning; the very beginning.

When I was a toddler, it quickly became apparent that I was experiencing difficulties with my eye sight. I went to the pediatric eye hospital, where they identified a hereditary astigmatism. Instead of being spherical, my right eye is shaped like a rugby ball, disrupting how light lands on the retina at the back of the eye and distorting what I see. This is the reason I have worn glasses for as long as I can remember (apparently the first thing I did with my new-found vision was run headfirst into an oak table).

In addition, perhaps because of the misshapen eye itself, the muscles controlling eye movement were weak, colloquially known as a “lazy eye”. My brain couldn’t merge the two images it was getting into one, and so I would see double, with poor depth perception as a result. The eye hospital prescribed me horrible stick-on patches to cover one eye, in an attempt to force the eyes to work together when the patch was removed. I hated them so much my parents had to resort to using the eye-patch from a pound store pirate costume. This seemed to do the trick as the double vision became minimal and only occurred when I wasn’t wearing glasses, and while I still need glasses for the astigmatism, these I could get from a normal optician.

About twelve years later I would contract vital meningitis, ultimately resulting in M.E. The M.E would be worsened by the use of Graded Exercise Therapy, and a few months after this I began experiencing double vision again, even with my glasses on. I went to the optician, and they gave me glasses with extra prisms in to compensate for this.

Over the next decade, my double vision would have worsened enough to warrant stronger prisms upon every return trip to the optician, but despite the rapidly escalating issue no one seemed to think it was especially concerning, and I trusted this judgement. This continued until my most recent visit to an optician, around 18 months ago. My double vision had once again worsened and I was in need of a stronger prism, but having looked over my prescription history the optician referred me to the eye hospital instead, concerned that the prisms had been doing more harm than good the entire time.

The first clinician I saw at the hospital was essentially a sort of triage to direct me to the right specialist. After a brief test she determined that there was nothing extraordinarily wrong with my eyesight, but wanted me to see a doctor for some headaches I had also been experiencing.

I returned to the clinic a few weeks later, where the doctor ascribed my headaches to stress and dehydration (it would transpire that they were actually the side effect of a medication), but wanted another specialist to review my eyes. This doctor also claimed that my eyes jumping rapidly from side-to-side uncontrollably was perfectly normal, so I was pleased not to see him again.

That summer, I returned to the hospital again where the clinician actually took the time to properly assess the situation. As she worked, she explained that my experience was not uncommon for people with M.E or similar conditions who had eyesight issues already. The muscles at the back of my eye had weakened just like the rest of my body. I came away with a diagnosis of decompensating esophoria (a.k.a. my eye does what it wants, when it wants) and a few treatment options, including the idea that once the issue progressed to a certain point within the next five to ten years, corrective surgery may be needed. She asked that I return in a few weeks when I had made a decision about how I wanted to proceed.

When I returned to the clinic, I was with the first clinician I had seen. She decided I didn’t have the diagnosis written down in front of her, that I should never have been referred to them, and that I also didn’t need any of the treatment options offered. She couldn’t understand why I didn’t just use over-the-counter reading glasses, as she didn’t realise until I pointed it out that I also had an astigmatism. I had to insist in the need for treatment until she finally relented, begrudgingly giving me the bare minimum suggested.

I spent the next few weeks sticking a plastic prism to my glasses which, being so weak, didn’t really help. Some stronger prisms were sent out to me, and after some trial and error I found the right ones for me. This brings me to my most recent hospital appointment.

At the most recent clinic, I was seen by another new clinician, fortunately one who was careful in their assessment. This doctor confirmed that the diagnosis of decompensating esophoria was correct, and said she would write to my opticians instructing them to prescribe a pair of reading glasses with extra-strong prisms built into them. At least I wouldn’t need to keep applying stickers to my glasses whenever I wanted to see text. She then sat on the chair next to me for the ensuing discussion.

The prisms I was first given when I was a teenager were most likely a mistake, addressing the symptom but not the cause of the double vision, and ultimately making the problem worse. She could not fathom how no optician over the ensuing decade had been so quick to simply prescribe stronger and stronger prisms without seeing the worrying decline in my ability to control my eye movements. At this point however, the damage is done and the use of even stronger prisms is required.

Then came the bombshell; the need for surgery will probably now come in the next 2 years, not the next decade. While the surgery is simple and routine, consisting of detaching and reattaching the muscles controlling eye movement to hold it in the right position, I still don’t relish the idea of having someone poke my eyeball with metal sticks while I sleep it off.

As the final flourish, I won’t get a penny towards my new glasses either.

I came away from my most recent hospital appointment with an all-too-familiar mix of emotions; relief that I had been believed, gratitude that I would receive treatment, frustration that no one picked this issue up earlier despite constant monitoring, and anger that I had received medical gaslighting, this time about symptoms I couldn’t even fake (if you tried to fake bogus eye movements, the results would be wildly inconsistent). All the gaslighting has achieved is the need for more appointments and more severe treatment, but it’s so deeply entrenched in our healthcare system that many medics simply cannot help themselves.

In the meantime, I shall simply look forward to one day reading this through clear lenses, rather than finger-print covered plastic stickers.