Invisible Illness / Disability

Following on from my last post about my brain surgery, in this post I’m going to talk about invisible illness / disability. This is a topic I have a lot of experience with and I imagine there are many others out there who also deal with issues related to an invisible illness.

Close up shot of both my eyes
Close up shot of both my eyes, Misplaced pupil on right eye and misshapen pupil on the left

So I was born with bilateral cataracts, meaning I was blind until they were eventually discovered and removed at around 18 months. Congenital cataracts should be detected by 6 to 8 weeks to reduce the risk of long-term vision problems (NHS Choices – Childhood Cataracts). In my case this didn’t happen and as a result I am partially sighted but crucially my vision isn’t so bad that you’d notice, unless it came to certain situations or if you notice my unusual pupils.

This is my left eye

Situations such as; trying to read the overhead menus in a fast food place, trying to read a menu in a pub and reading prices on things behind the counter in shops. So depending on who I’m with I find it hard to ask for help and get really embarrassed that I’m struggling. I know logically that nobody would mind reading to me but having someone read in itself is embarrassing particularly if I was alone unable to read the price on the items behind the counter, so if that situation arose I’d end just asking for the item and paying the price even if it was ridiculous. I also really struggle to recognise people I know, which can create awkward situations. Everyone knows I’m partially sighted but I don’t think people realise I struggle recognising people. In order to recognise a person I would have to look at them in a way that would look like a creepy stare, which is not a good way to start an interaction even with someone you know. So this leads to awkward situations where people thinking I’m trying to blank them when I’ve genuinely not seen them.

Marti modelling a Dorothy Perkins dress

As long as I can remember I’ve suffered with anxiety and depression, these have a large impact on my life and what I do. I think they developed due to growing up with my vision problems and my gender differences (I shall discuss my gender further in a future blog post). So these invisible illnesses make simple things difficult, finding the motivation to get up and get dressed or clean the house, finding the courage the leave the house to see go to the shop or pick up the phone to arrange to meet a friend, finding the energy to maintain the pretence of not having mental health problems due to stigma that still exists around it.

Post surgery photo

 

Then to add to these existing issues, following my brain surgery in 2015 I’m now epileptic and suffer with migraines. At the time of writing I haven’t had a seizure for over a year but migraines are frequent, I’ve had 4 days this week. Now some people who have never had a migraine (Including me prior to having one) think that a migraine is just a headache and you can just get on with it, you really can’t. The pain of a migraine is absolutely debilitating, you can’t do anything, light, sound and even movement make the pain worse and you have no choice but to remain immobile. I’m now on medication and have made changes, which are reducing the frequency of my migraines, and I have medication to take which helps shorten the attack (usually). I’m quite fortunate with my migraine as I don’t get nausea as most people as suffer so that’s a small blessing but becoming a migraine sufferer has made my profession somewhat more taxing, I work as IT technician.

What I’ve recently realised and I hope the takeaway of this post is that there are a great many people out there with some form of invisible illness / disability and they are often embarrassed by it, so do what you can to make them feel comfortable talking about it with you and if you have one talk about it so others talk about theirs. Please let me know what you think in the comments below or share you story with me.

Additional Reading

The Third Anniversary of my Brain Surgery 11/03/18

NHS Choices – Childhood Cataracts

NHS Choices – Depression

NHS Choices – Migraine

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