Picture description: a white wall reading ‘centre of rare diseases’. On the left there is a blue circular logo partially seen behind a purple sign that reads: "help us to support heart patients and their families at QEHB". Below the writing is an infographic with statistics on.
I've been a bit quiet on here lately as I've been struggling a lot with anxiety because of both my eye condition and general lockdown life. Although lockdown is now over, my eye disease and the hefty treatment that comes with it isn't. And whilst I and many others are now allowed out of the house, rare eye conditions have a way of keeping us locked down in a mental isolation.
When it comes to 'invisible' diseases and/or rare conditions, there's a very real side effect of anxiety and loneliness. It often feels like no one else really understands the impact it has on you, especially when others can't see your illness. If someone were to break their leg, you can see from the plaster, crutches or wheelchair that they will struggle with getting around, with stairs and being independent. With vision loss, no one else can see how you see - or how you don't. I can make pictures to try and explain the blind spots, sparkles and distortions, I can describe the impact, I can cry, write and even make dark jokes, but the reality is, no one else will ever know. Often, unless I tell you, you wouldn't even know anything was even wrong with me.
And I don’t blame anyone for not knowing the impact it has; even amongst the individuals of the sight loss community, whilst we may understand one another’s feelings more so than those without an eye condition, we still don't know who else suffers from a vision defect or how they experience it. Our experiences of vision loss are all wildly different. I can guarantee that how I see as a PIC patient is completely different to other individuals with Punctate Inner Choroidopathy or similar eye diseases.
I know I'm not alone in these feelings of anxiety, loneliness and depression though; the Macular Society recognises how the diagnosis of an eye condition can have the same emotional impact on an individual as bereavement does. This makes sense. It is a loss, and a big one. I try to accept the feelings that come my way as a by-product of PIC because I think grief is there to be felt. We can't always be positive or smile, because sometimes it just feels impossible. We are having something taken away from us against our will, and with no certainty of treatment bringing it back. Bottling up the negative feelings isn't productive; it's damaging and detrimental in the long term. They demand to be felt at some point.
And even though I know others with eye conditions go through this too, it’s hard not to feel alone when you don't know anyone else in 'real life' with vision loss. Thank god for the virtual world; the communities on Facebook and Instagram are the world's biggest help. That's not to say my family aren't a great support, they really are and I hugely appreciate their empathy, but sometimes it's challenging knowing that very few people will fully understand (really hoping that I don't sound like an ungrateful b*tch here for the support I do get from family and friends, but these are my feelings 😂🤷).
Whilst I know and appreciate that my vision is actually really good now - I'm lucky that treatment has cleared up my blind spots enough that they no longer interfere with the central vision (and I can now read pretty much the entirety of the Snellen chart) - my anxiety largely stems from the fear of going through it all again and losing my 'good' eye. I say 'good' with a pinch of salt; the vision in that eye is poor in terms of prescription (-8.00 in contacts and I think -8.50 in glasses), but I am grateful that for now it is still correctable with lenses. I've sort of accepted that although I don't want my bad eye to get worse, I have coped with much less vision, and as long as I always have one good eye, I'll be okay. But the thought of something happening to my good eye haunts me, and I can't seem to let it go.
If I were to lose my good eye, if it were to have the same amount of blind spots and distortions as my left eye does, then I know I would struggle a lot more, and it could possibly start to impact on my day to day life.
As a result - and I'm sure many of you with eye conditions can relate - I find myself *constantly* checking my eyes. Multiple times a day - an hour even - I check my bad eye for more blind spots, distortions and changes to the shape and size of my scars, and I check my good eye for signs of a change too.
So for those of you who saw my Instagram post a few weeks, you’ll know that a few weeks ago I had an impromptu hospital visit to check on my good eye after I found a blind spot in the peripheral.
For months now I've had a slight distortion there, but it seemed to have developed into a blind spot. I'd been feeling really frustrated and confused about what to do, because although I knew a spot was missing, I also knew it wouldn’t show on scans. Annoyingly, this is normal for PIC; patients often see changes before they can be detected by technology (my last flare took four weeks to show on an OCT), and it can mean that treatment is delayed. But I went to the hospital anyway to get it checked, and unsurprisingly, there was nothing untoward on the scans.
To my surprise though, my doctors said that actually, despite its absence on the OCT, the blind spot in my good eye is real, but that everyone has one in the area I’m reporting. It's called the 'physiological blind spot'; honestly, Google it, it sounds bizarre but it is real. My ophthalmologist said that I’m more prone to noticing it because a), I have small vision gaps in my left eye and b), I’m very anxious about losing sight, so I’ve become very conscious of my visual abilities, and so I spot things that others might not - things like a naturally occurring, normal blind spot. Although I initially felt relief, guilt then flooded in; had I wasted doctors time? Taken away an appointment from someone more in need? And then anxiety rears its ugly head again; is this definitely a correct diagnosis? If it is, can I trust myself to notice ‘real’ changes to my vision? It really is a carousel of emotions; you go up and down and round and round a cycle of different feelings, but you’re always lead by and strapped down by anxiety.
Although I whole-heartedly like my doctors and know I'm finally in the best place for PIC treatment, when you've been through a process of misdiagnoses, dramatic vision loss, vision regain, and then further changes that don't show on scans for weeks and then eventually do and need intense treatment, I've found it hard to feel comfortable with this diagnosis. I’m not saying my doctors wrong at all, I know they’re right, but you could say I have trust issues. This isn’t a reflection of the team, I know that the ophthalmologists caring for me now really are experts in PIC, so I have to try and let go of the past misdiagnoses and delayed treatment. I know realistically that I am safe in their hands, but telling my mind that is another story.
Two weeks have passed since that appointment and I still feel so worried. It scares me that I have permanent damage from PIC in my left eye, and that I might one day end up with it in right eye too if it’s not treated quick enough, so I’m constantly checking my eyes and always feel on edge. It's perhaps not good to be checking for new changes as much as I do, but when you've been so impacted by an illness, prevention or quick treatment becomes so important to you that 'checking' almost becomes addictive. And in some ways it does pay off; just last week I noticed a blurriness to my bad eye (despite the blind spots the vision is usually very sharp), and small changes to the fovea (the central part of your vision responsible for precision) showed on the scans, which could possibly explain the blurriness. But despite the small benefits that checking has – like spotting changes early – it can become very difficult to live a normal life when you feel constantly afraid of losing more vision. The physical impacts of an invisible illness are hard enough as it is, so how do you manage the mental side effects?
There is a simple solution really: stem cell therapy... 😂 (as you can see, I am definitely a scientist, hence the use of the word 'simple' 🙄). If stem cell treatment or bionic eyes could just hurry up and help vision loss patients out asap pls, then maybe I will finally stop worrying 😂 On a serious note though - a huge thank you to all those contributing to stem cell research, I am really hopeful it'll see success in the next few years 🤞
But until then, we wait, and I, and many others, have to try and learn to manage the anxiety and depression that comes with vision loss. Maybe it comes with time; I guess I’m still newly diagnosed and haven’t quite got control of my PIC yet, so the emotions can vary just like the my vision can. I’ve found interacting with others online to be the biggest support; to talk to others who know how you feel, are going through the same or similar treatments, have experienced like challenges, have the same dark coping humour or are just able to offer some well-informed advice, really has been the greatest thing and has kept me going. These strangers, many whom I imagine I’ll never meet, who live in all different time zones across the world, are some of the people I am most grateful for.
But I also know that professional support is out there too if I need it, and I definitely urge anyone struggling to reach out for help. Vision loss is hard, and you shouldn’t have to do it alone. But if you’re not sure where to turn to, I’ve put some links in at the end of this blog; please do access them if you need.
I must admit, this isn't the cheeriest of blog updates, but unfortunately, this is the reality of vision loss; it doesn't just affect your eyes. And hey, you were warned; I did say I'd be documenting the good, the bad and the ugly 😂
Hopefully now that I’ve started back at work, shifts are busy and I have something other than my eyes to focus on, the anxiety will lessen. But let’s see! I don’t have to tell you again though that PIC likes to throw spanners in the works when you least expect it... so let’s see what happens in the coming weeks. But until then, I’m trying to stay calm, stay positive, but accepting whatever feelings may come my way. Hopefully things will get better soon 🤞
For help and support with PIC please access the following links:
The Macular Society:
PIC Society:
University Hospitals Birmingham:
Royal National Institute of Blind People:
For help with other eye diseases:
The Royal National Institute of Blind People (RNIB):
Retina UK:
See Ability:
For further help and advice, please see the NHS advice on blindness and vision loss:
For mental health support, please access the following links:
RNIB - See Differently (an article on coming to terms with vision loss and access links to their counselling services):
Macular Society - counselling service (for all eye diseases):
Additional mental health support (not specific to vision loss):
Mental Health Foundation:
MIND:
Rethink Mental Illness:
Samaritans:
For further advice and support, please see the NHS advice and guidelines:
Comments