I have thought long and hard about posting this blog post and then I thought that at the end of the day, I use this to get my thoughts and feelings down and my thoughts and feelings are valid. It’s not my intention to offend anyone, just to give my opinion.
My Moorfields appointment is coming up soon and I can’t even express the anxiety and worry that this has created inside of me. I have been crying at the drop of hat, yet people seem to suggest it is my pregnancy hormones. This is my exact point about the lack of understanding when you are dealing with progressive vision loss. If you are reading this and not going through vision loss, put yourself in the position of someone who is. You know at your appointment, you are not miraculously going to be told that your vision is suddenly better and your disease has magically disappeared, you are going to find out that possibly the disease or condition has stabilised, but more likely, it has progressed, especially the stage that I was at when diagnosed. Then you sit there and try and work out letters on a chart that you may not be able to see anymore and feel the heartache that comes with that and then imagine having to sit there and find out if you are still able to drive, that there is a possibility that your independence is going to be ripped from you in seconds. No more running errands, little trips to the shops unaccompanied, time out for yourself having the freedom to go and do just what you please, that no longer exists. Even if you are lucky and keep your licence, you understand it’s only a matter of time before it goes. Well-meaning people telling you they will take you places if you need it and then the time comes and you don’t fit in with their schedule or they have their own busy lives to attend to, so you are stuck trying to work round bus timetables if you are brave enough as you have never had to use them before and can’t even see what they say. The stress of dealing with public transport when you struggle to even see your own face in a mirror and then this is where I get confused and what has been playing on my mind. The same people who avoided me and said nothing after my diagnosis of Stargardts, congratulated me on being pregnant. Why do we find it so easy to talk about the good stuff but never the bad? What makes people feel so uncomfortable that they feel they can’t discuss something in your life that impacts you on a daily basis?
I can guarantee when my baby arrives, people will want to come around, people will offer you help, people will offer to have the baby whilst you sleep, to pop and see you in the day. Greg will get two weeks paternity leave from work to spend time with me and the baby, give us support when everything is new again. I will have a health visitor come around to discuss any concerns. This is the sort of support I needed after my optician discovered my disease, the support I needed after my diagnosis at Moorfields, the support I need on the run up to my appointments. I couldn’t function properly from being in a state of fear after my local hospital suggested I had Stargardts and was going blind. The next day everyone was back at work and I was sat on my own having to deal with what was inside my head. There was no support offered to me from the hospital, just left to deal with my new life. And then we are left wondering why so many people with vision loss or blindness are left with depression and anxiety? If my appointment in a few weeks’ time was an operation, people would more likely discuss it, wish us well, give support after, because an operation leaves something visible, something others can see that indicates we are hurting and in pain. Vision loss doesn’t do that.
I feel there is a massive lack of support for people losing their eyesight between the ages of 25 and 50. There seems to be very little out there for us. When my baby is here there are plenty of baby groups I can go to, to meet others and discuss parenting problems, but there is nowhere for me locally to go and meet up with people my own age and discuss my vision loss. I know this is because we are in the minority and there aren’t many of us dealing with this, but something would be nice all the same.
We hear countless times how many people overuse social media too, articles about people sat on their phones too often and not paying attention to people in actual life. Well the support I have found online has been immeasurable. People online know more about my thoughts and feelings than the majority of people in my daily life, because they talk to me. They ask me how the run up to my appointment is going, people I have never even met take the time to ask me and sometimes that is all that is needed to offload some of your scary thoughts. I honestly don’t know how I would cope without support I gain from my phone. We have become a society of well-wishers but shy away from other people’s problems. Maybe we are all under so much pressure in this day and age, it’s just easier to deal with our own issues, maybe we are more open when we talk online, but quite often for people, social media is a big support network and shouldn’t be belittled.
I apologise that this post is quite negative for me, but some days I feel angry inside at the lack of understanding and interaction I get about Stargardts. I honestly don’t want it to be my topic of conversation daily, far from it, that is not what this post is for at all, but since becoming pregnant it has made me realise just how much others struggle to discuss it and if I am honest, it disappoints me greatly. We don’t need full blown support through the good times we need it a lot more through the bad and scary times. I am used to waking up in the night without being able to get back to sleep and feeling so overwhelmed I don’t feel I can do something, but Stargardts has done that to me, a new born baby will be a blessing. It certainly won’t be as difficult as discovering that one day you won’t even be able to recognise your own children in front of you, now that is the hardest part of this journey.