Lifestyle Vision

My Thoughts and Feelings

March 15, 2019
A photo of me with my makeup done

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? 

A picture of Moorfields Eye Hospital Building
Moorfields Eye Hospital

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.

Me and my son rock pooling x
Me and my son rock pooling x

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.

You Might Also Like

16 Comments

  • Reply George Rector March 15, 2019 at 10:23 pm

    Katie, we arrived home from a cruise only a few minutes ago. I’m not going to simply say, “I understand,”and roll away. If I may, I’ll send you a personal message, though it might be the first of next week. What you said is so true. It is hard for people to understand things that they have never experienced. Stay strong, please.

    • Reply Katie April 25, 2019 at 10:43 pm

      Thanks so much George and for all of your support x

  • Reply Vanessa March 16, 2019 at 7:50 am

    Hi Katie, I love your heartfelt sharing and honesty. Do what you need to do to keep you well and to cope with what is happening to you. My Mum loss her sight at age 70 but was fit and healthy otherwise. The coming to terms with and the fears of her losses of freedom were massive for her. Loved reading your blog. Hugs Vanessa

    • Reply Katie April 25, 2019 at 10:44 pm

      Thanks so much and thank you for reading. Sorry to hear about your mums vision ❤️ It is sometimes the fear that can be the hardest part x

  • Reply Osinachi Okoye March 16, 2019 at 8:33 am

    Hi Kate, so sorry for your terrible new and congrats on the baby. You’re story has really moved. I can’t even imagine what you’re going through but I’m so happy that you have your family.

    One thing I was thinking whilst reading on your lack of support online is for you to maybe if you’re up for it to provide the support. Creating Facebook group and even a website (that might be to far and stressful) but if you need any sort of help with this if you think you will do it. I am more than happy to help. I work with social media. But it’s so true, good news gets an influx of messages but it’s never the same with bad news.

    • Reply Katie April 25, 2019 at 10:48 pm

      Thank you and thank you for reading. I do run a support group on Facebook that I started last year and is a very active and engaging group 😊 thanks for offering your help though, much appreciated.

  • Reply Elaine Fitzpatrick March 16, 2019 at 9:36 am

    Hi Katie this is the first time I’ve visited your blog. This article is really soul searching and I feel your pain. I can wsee that the loss of independence is a huge issue. It is very sad that people arecscared to discuss negative situations and bad news – possiblynits out of fear of saying the wrong thing! However making a comment even if on occasion it’s a little inappropriate let’s you know that they have thought about your situation.
    I hope your appointment goes as well as it can for you

    • Reply Katie April 25, 2019 at 10:49 pm

      Thank you for reading and for your kind words x

  • Reply Kim Owens March 16, 2019 at 12:20 pm

    Katie, thank you for sharing. My 16yo son’s recent appointment at Emory in Atlanta USA left us all feeling emotional. I can’t even imagine the day when he says “I can go by myself” or “…with my girlfriend…” It’s never an easy day and we all feel a bit depressed by it but I want to be by his side for all of that. I know he feels sadness about not being able to drive, very few people local, his age, to talk with about it etc. As a mom, I feel that way too. Thank you for sharing your thoughts and feelings so openly. I’m so glad to be Instagram friends. Sending love.

    • Reply Katie April 25, 2019 at 10:54 pm

      Thank you so much Kim and I understand how difficult appointment days can be, not just for ourselves with vision loss, but for the people who accompany us too. I feel for your son and understand what it’s like to have nobody around to talk to with the same condition, but I understand parents and partners can feel that way too ❤️ Sending hugs and always here for you x

  • Reply David Seffer March 16, 2019 at 12:42 pm

    Hi Katie, thanks for your thought provoking comments. I don’t have Stargardt’s, but my older brother, and older sister, and most sadly for me, my 2 sons have it. In all my family cases, the onset was at puberty. My 22 year old daughter, born from my 2nd wife, needs glasses, but no signs of SMG as yet, and hopefully never.
    Keep blogging, and keep your chin up. And good job with your family! Seems like lots of love going on there!

    • Reply Katie April 25, 2019 at 10:59 pm

      Sorry to hear that your siblings and your 2 sons have stargardts. I can only imagine what it’s like for a parent to go through this with their children, but please believe that they will still lead amazing and fulfilling lives and this won’t stop them 😊 thank you for reading my blog and your kind words.

  • Reply Alison March 17, 2019 at 12:56 pm

    I can’t begin to imagine what you are going through but you are right about the support for all kinds of things online. Sending love ❤

    • Reply Katie April 25, 2019 at 11:00 pm

      Thank you so much ❤️

  • Reply Rachel (Stargardts FBGroup) March 18, 2019 at 5:29 am

    Another great post, thanks for sharing.

    • Reply Katie April 25, 2019 at 11:00 pm

      Thank you and thank you for reading x

    Leave a Reply