Ironically to end eye health week, it is my 2-year anniversary of my official Stargardts diagnosis. 2 years ago, to the day I walked out of Moorfields Eye Hospital and my whole life had changed forever. Being told you are losing your eyesight at 32 is just something that unless you have been through it, you cannot comprehend. Some people may not understand me when I say this, but I felt in a way that I had been given a terminal diagnosis that day. Some people will read this and feel I am over reacting and I have no right to say this, but I’m afraid unless you have been told you are going blind, you will never understand how those words make you feel inside and the impact they have on your mental wellbeing. The fact that there is no cure for my condition, and I have to watch my eyesight fade in front of me, leaves one feeling completely helpless and in despair.
Have things got easier for me in those two years? As much as I would like to say yes, the answer is no. I am learning to adapt to my changes and new blind spots, but because this disease is progressive and mine is currently progressing, time is not really the healer. As time goes on, my vision loss just gets worse. I don’t feel the despair I felt when I was first diagnosed and the feeling of sheer terror has thankfully passed, but I do still often feel scared. I often worry that I won’t be able to cope as my vision gets worse, but I know in my heart that I will have to. Lots of other people do with this and I have no other choice.
After my diagnosis, so many people stopped asking me how I was. I notice that people who are physically ill are asked how they are, or people ask of them to see how they are and if they are getting better, but it’s a rarity for me to ever be asked ‘how are you?’ ‘Are you ok?’ I feel this may be because people are scared of the answer when it’s something that can’t be fixed, or they truly don’t realise the impact this has on someone. I have found the best people to talk to really are people going through the same thing, this has helped me no end. I am lucky that I have a lot of support from others I have met through Stargardts and am lucky to have the support of a few close family members and friends.
In the two years that have passed, I am proud of the way I have handled this. They aren’t words I ever thought I would say coming from someone who usually puts their self-down and picks out all the negatives, but I am proud. I look back and the way this disease made me feel, I could have fallen into a pit of despair and some days I still feel like that when it has frustrated me so much, but I won’t let it beat me, my life is worth more than Stargardts. Stargardts can make life harder for me but it can’t take my life away from me and that’s what I need to remember. I am still me, I’m still Katie, Stargardts won’t change that ♥️.