Left eye issues

Between the ages of 8 and 10, I had recurring issues with my left eye: swelling, drooping, and vision problems, especially in summer. Doctors dismissed it as hay fever or dryness. But by 15, the symptoms returned worse. In college, it affected me deeply. I avoided eye contact, even with loved ones. When lockdown happened, I actually felt relieved — no need to explain how I looked or face anyone.

Diagnosis

After lockdown, I was diagnosed with ptosis and referred to Moorfields Eye Hospital. I had eyelid surgery, but the symptoms came back. That’s when I was told I had myasthenia gravis, an autoimmune condition causing muscle weakness. No one explained it clearly. My family and I had to search online ourselves. I felt overlooked until I found Myaware — a support charity that made me feel seen.

In late 2022, a specialist finally explained that my immune system was attacking the nerve-muscle connection. More tests confirmed I had generalised MG. Suddenly, everything made sense: the leg pain, shortness of breath, droopy eyelids, and constant exhaustion.

At university, even before things worsened, I struggled. I had double vision during lectures, sore and weak hands that made typing and writing difficult, and many days I was in too much pain or fatigue to attend. The travel alone was exhausting, and walking to campus made coping even harder. After my worst episode in March 2023, when I became completely unresponsive and bedridden for days — my first myasthenic crisis — everything changed. The crisis increased my anxiety because I feared it would happen again, especially in public. I was put on pyridostigmine, which didn’t help much, then I started steroids (prednisolone).

At first, I felt okay. But over time, the side effects hit: moon face, bloating, and weight loss. My confidence took another hit. Breathing was still difficult, and doctors suggested surgery. Terrified, I went ahead with a thymectomy. At the time, I was on high-dose steroids and struggling to maintain weight, needing supplements to support recovery.

Eventually, I began tapering off steroids. The swelling went down, and I started to feel more like myself again, despite withdrawal symptoms. Sadly, many MG symptoms returned. My left eye droops again, double vision is back, breathing feels tight, my limbs ache constantly, pain and fatigue return, anxiety is severe, and crises still occur.

Prioritising my health

In 2024, I decided to leave university after being asked to repeat the year due to missed time. It was simply too difficult to continue. My health had to come first.

Sometimes I wish I could do what others my age do: go out, enjoy myself, and not worry about consequences. As a 21-year-old woman, I do feel like I’m missing out. But I’ve learned to listen to my body, take things slowly, and prioritise my well-being. There will be a time for those things, just not now. And that’s okay. I have faith things will get better. Even though I worry and sometimes fall short, I know it will work out.

MG is often invisible and misunderstood. People assume you’re fine because you look fine. Even some doctors downplay it. But the pain is real, and how you feel is valid.

Rest without guilt. Say no. Rebook if you need to. Prioritise your health. Be kind to yourself. You deserve that.