Last week was World Sight Day, arguably one of the most important awareness days for people living with sight loss.
Until I experienced sight loss myself, I knew very little about what sight loss 'meant'. I didn't understand what people with sight loss could see, whether they were restricted in what they could do, or how they did things. Since developing an eye condition myself, my knowledge on sight loss has increased dramatically. This has also been supported by interacting with people with sight loss every day; be this virtually or in 'real life'. I am still learning more about sight loss.
A couple of months ago, my nephew asked me a question about sight loss, and explained that he was confused. I realised that many people do not know things about sight loss simply because they have either never met someone with sight loss (or do not think they have), or, they have never been able to confidently ask someone who might know the answer. Even in instances where someone has had an opportunity to ask, they may have shied away for fear of seeming 'daft', or even offensive. But unless we ask, we cannot learn, and ultimately, this impacts how much awareness we raise.
So, as a small campaign for 'World Sight Day', I asked people to submit any questions that they may have about sight loss, and gave them the opportunity to be able to do so anonymously so not to worry about appearing daft or worrying about seeming offensive. My belief is that as long as people are interested in learning, bettering their knowledge, understanding more about the impact sight loss, and are keen to help raise awareness, there are no daft or offensive questions.
A number of thought-provoking questions came in from anonymous respondents. Although I do not everything that there is to know about sight loss, I do know what I’ve experienced and what I've learnt from others with sight loss, and I've tried to reflect this in my answers to the questions submitted. Hopefully what I've shared is useful and will help others understand sight loss better. A big thank you to everyone who contributed the questions. Keep reading to see what what was asked...
“As a young person, what challenges do you face socially when people find out about your sight loss?”
I think those who don’t have sight loss can find it difficult to understand the emotional impact of losing vision, and so in social situations it feels like you have to just put on a brave face even when you actually feel broken. You can feel like a burden; especially on days when you're meant to be socialising with friends and having a good time. Confiding in someone takes a lot of courage, but it can feel like you are burdening them if they don't understand or have lived experience. It can be hard to put on that brave face, but of course, we inevitably do.
In a more physical social setting sense - lighting! Socialising in reduced lighting is very uncomfortable, and you don't really realise how unsuitable someone else's home, or a social setting (a pub, or restaurant, for example), is for someone with sight loss until you find yourself in an incredibly dim setting where you can't see well!
Another individual with sight loss on Instagram offered some additional social challenges:
Insensitive jokes: whilst it can be okay poking fun, this isn't for everyone, and it's important to know that there are boundaries, and things can sometimes go too far.
Not noticing someone and their feelings getting hurt: some people with sight loss find recognising people to be very challenging; it isn't personal to the person you didn't see, it's a sad reality that comes with sight loss. We don't realise how much we rely on good vision to recognise faces until you have vision with missing patches, distortion, blurriness or haziness.
Crowds or multiple people speaking at once: If you have difficulty recognising faces, it is easy to lose people in crowds. Equally, it is hard to know who is speaking, even more so when the conversation is fast paced and moving between people, because you need to be able to recognise people instantaneously to be able to keep up.
Having to ask for rides/plan trips in advance: This one is tough. Although I am fortunate that I am still able to drive, I find it very hard asking for lifts to hospital visits where I'm not allowed to drive to (in case I need treatment, or in case I am dilated). I truly feel for those who cannot drive and have to ask others. It is that loss of independence, and again, the feeling of being a burden on others, especially if you are a younger person and your friends are all able to drive.
“What challenges did you face medically when seeking diagnosis?”
The biggest challenge was getting misdiagnosed multiple times. This meant my treatment was delayed, resulting in some permanent sight loss. It wasn't the only challenge though; not being taken seriously, being treated without any emotional tact, not having my symptoms picked up on scans... the list goes on. Each has had a lasting effect on me, be that physically through sight loss, emotionally, and even mentally, often resulting in a reluctance to get help even when I knew I need more treatment.
I think something else which has contributed to the challenges I have faced is PIC being so rare; so few people know about it that it can be difficult to get diagnosed, which inevitably means getting misdiagnosed and more sight loss. I'm not the first person to get misdiagnosed and be told my condition isn't manageable. We then have an additional layer to PIC's rarity; treatments are often off-license; they aren't designed or meant to be prescribed to those of us with PIC. We give them a go anyway, of course, because although there isn't solid research out there to say that it can help us, the treatments do work in conditions with similar symptoms. And it goes without saying; many of us will try anything.
Despite these medical challenges, I now have that all important diagnosis, and I have the most amazing care team.
“What age were you diagnosed and do you have to take medication?”
I was diagnosed a couple of months after my 24th birthday following three months of symptoms that started just two weeks before my birthday. Typically PIC does affect younger people (especially women), whereas more common eye diseases usually affect the older population.
I take seven tablets a day for my eyes; six are immunosuppressants, and one is to help with digesting the tablets. I also inject myself fortnightly with an immunosuppressant called Humira. As PIC is an inflammatory autoimmune disease, the immunosuppressants calm down my immune system, and essentially try to stop it over reacting and thinking it needs to attack my eye. Tablets on their own haven't been enough, so we had to increase the dose and add in the Humira injections.
"Did you feel there was stigma with your age?"
Yes, and I still do! As I wrote above, the most common eye diseases affect the older generation, so a lot of people assume that someone young cannot lose sight. Perhaps this contributed to my misdiagnosis - who knows?!
I think as well when you are young, if you say you have sight loss, to most people this means you need a corrective prescription. I've heard so many people say; "I need glasses too!", and whilst I do actually need glasses, that is a separate condition entirely. Unfortunately, for people with sight loss, lenses cannot restore vision that has been permanently damaged.
I think sometimes there can even be an emotional weight that comes with the age stigma; I've heard a lot of people say that losing your sight when you are younger is actually 'better', or 'easier to adapt to' because there is a stereotype of young people all being technological wiz kids. This can mean that there is a pressure on younger people to not feel sad, or have a strong emotional reaction. But regardless of how good you are with technology, sight loss is hard on all ages, and there isn't anyone who will find it 'easier', or necessarily 'deal' with it better.
“How do you stay positive? It is so draining fighting the same fight every day forever.”
I don't, often. There are lots of hard days with PIC, and with any eye disease, but I think it is important to acknowledge your feelings and work through them. I won't shy away from the fact that I have had extensive therapy specifically to cope with having a sight loss condition. There were multiple therapy appointments that I thought were pointless, because I didn't think I would get better emotionally. I thought that this was it; this was my way of thinking and I was stuck like this.
I'm not saying now I'm so happy I'll rename myself Larry, but I am saying that I know that bad days happen, and I know they come and go. They go.
I know how to deal with my thoughts now. I know that the world does not end when you have sight loss, even though I once thought it did. I know that things carry on and there are new ways of learning to do things.
But it's so important to know that it is also okay to have bad days. And if you can get professional help to get you through them, I seriously recommend it. Your bad days aren't your every day, but if you need a qualified person to help you realise that, then please ask for help.
Away from therapy, I find making fun out of myself really helps me to stay positive, because what is better than laughing at yourself? I also find that talking to others who understand what you’re going through is an amazing help.
Positive thinking is also why I run this blog and my social media pages; raising awareness and hoping that others won't experience this keeps me going. It pushes me to keep going and show people that life does go on, so maybe those who are in the position I was two years ago won't be left thinking otherwise.
“How was it seeking support of similar experiences? Did you find any support and did it help?”
It was difficult seeking support at first because I didn’t know where to turn to. There was no one in my 'real life' who had experienced sight loss. No one could relate to me. No one knew how I was seeing.
There were never any support recommendations from my eye care teams. In fact, I even had one eye professional ask me why I was upset after he told me I would lose my sight. I needed support, but I was almost made to feel like I shouldn't. I didn't understand what was happening to me, I didn't understand why, I didn't know anyone else who had survived this. I didn't know if I would survive it.
Then I found Facebook groups; one for younger people with macular degeneration, and eventually, after I got my diagnosis, one specifically for people with PIC. It sounds dramatic to say that social media changed my life, but it truly did. I interacted with people who knew what I was going through, I made friends. This virtual support system certainly made the lockdown periods, shielding and multiple flares so much easier. I've since even met one of these friends in 'real life'!
These online friends have helped me talk through my feelings, given me advice and shared their stories with me. I owe these people - most of whom are still technically strangers - so much. Having them there to lean on is incredible.
"What are the chances of a cure or treatment in our lifetime to bring back sight lost from the scarring?"
This is a tricky question to answer, because no one really knows when a treatment will come. BUT, we do know that there are trials currently underway to help replace vision that has been lost.
In the works are gene therapy and stem cell therapy, and probably much more than I could possibly even imagine! I know that some human trials have been done and with some positive results so far, but I dare say things are a long while off yet, and I am sure that Covid has inevitably delayed research.
That doesn't mean though that we shouldn't be positive. Options are being explored, in all avenues too; not just gene and stem cell therapy. Technology has come on leaps and bounds in helping those with sight loss, and will only improve more, and they continue to develop the treatments already available. Anti-VEGF injections used for Wet Macular Degeneration, for example, are being improved so that patients can go longer between treatments. And I'm sure everyone would agree that the less needles in the eye that you have to experience, the better.
So stay positive; I know my ophthalmologists are, which is good enough reason for me to be positive. A cure will come, hang tight.
I hope that these questions and answers have shed some light on what it is like to live with sight loss. Remember, if you want to know, ask! Just always be respectful and willing to listen.