Alison’s story

I would tell people that eye health is incredibly important. Take control before you have symptoms, because early detection and treatment make all the difference.

I was diagnosed with glaucoma about eight years ago, in 2016, although it took a long time for anyone to actually use that term. After the surgery for my detached retina, I was being seen regularly at my local eye clinic. I was given a huge range of eye drops to prevent infection, inflammation and any further complications. Not long after the operation, I was told that the surgery had not been a success and that my right eye would not regain usable vision. I was in shock, but I was told I would still need to attend the clinic for check-ups. I continued using the drops as directed, not really knowing what each one was for, since I could not see anything at the time.  

After a few visits, a doctor mentioned that my eye pressure was very high, 48, which I now know is dangerously high. Up until that point, I did not even realise I was on medication to lower eye pressure. I remember thinking, “Hang on, isn’t high pressure glaucoma?” because my daughter has the disease. It took a long time for anyone to actually tell me I had glaucoma. Doctors kept talking about “high pressure” or “uncontrolled pressure”, but never used the word itself. I felt frustrated that no one was really explaining things to me. I was angry that I was being left in the dark, both figuratively and literally.  

About two years after the surgery, I finally sat down with a doctor who said plainly, “You have glaucoma. There’s significant damage to your optic nerve, and that can’t be undone.” Oddly, it was a relief to finally hear it. I had spent so long wondering what was going on. But it also made me question why no one had ever told me that I was at high risk of developing glaucoma. I had been discharged from an eye hospital at 16 and never advised to have regular check-ups with an optician beyond the standard two-yearly eye test. 

There is a strong family history of glaucoma, and I always make sure people around me are aware of it. If anyone I know mentions eye pain, blurriness, or has not had an eye test in a while, I encourage them to book one. It is so important to have your eyes checked properly, not just for glasses but for overall eye health.  

When I first went looking for information, I turned to Glaucoma UK’s website. I did not want to join a group or talk to anyone at that point, I just needed clear, reliable information. Their website gave me exactly that. I think it would be great if Glaucoma UK could work more closely with doctors to help them understand how it feels for patients when they are told they have glaucoma. It is such a personal, emotional moment, and sometimes that part gets forgotten. 

Before seeing the specialist, I knew very little about glaucoma. I knew it was an eye condition, but I did not realise that if left untreated, it could lead to sight loss. I also did not realise that because other members of my family had glaucoma, I was at much higher risk. On top of that, I had cataract surgery as a baby, which I now know is another risk factor.  

The diagnosis has had a big impact on my life. It has come on top of other eye conditions that also cannot be treated, and it is exhausting. Some days, I lose a bit more vision, sometimes only temporarily, and it can come back after a few hours. My sight can suddenly go blurry for minutes or hours and then clear again. Each time it happens, I panic, wondering if this is the time my vision has gone for good.  

The delays in my diagnosis still bother me. I cannot help but think “what if?”. In my twenties, I had constant headaches and told my GP about them for years. I was told not to worry, to rest more, maybe get a less stressful job. They were dismissed as migraines, but I was never given medication or referred for further checks. Looking back, I cannot help but wonder if that was an early sign. During Covid, I was dropped from the clinic’s list because I was not classed as urgent. It meant I struggled to get my prescriptions for eye drops on time, which was stressful and worrying.  

Over the years, I have been on various eye drops. At the moment, my eye pressure is still unstable, and the little sight I do have is likely to deteriorate further. I am still under the care of a glaucoma specialist and hopeful that things can improve.  

If I could raise awareness about glaucoma, I would tell people that eye health is incredibly important. Take control before you have symptoms, because early detection and treatment make all the difference. Living with blindness is manageable; it is the trauma of losing sight that is the hardest part.  

To anyone who has just been diagnosed with glaucoma, do not go into denial. I would advise you to accept the treatment you are offered, and if you do not have much support, reach out to Glaucoma UK. When you are ready, counselling can really help too.

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