Watch out for invisible disabilities
The International Day of People with Disabilities (IDPWP) theme for 2020 is “Not all disabilities are visible.” The IDPWP is held every year on the 3rd of December. I know I’m a day late but I’d like to share my experience of living with invisible disability.
This year’s theme focuses on spreading awareness and understanding of disabilities that are not immediately apparent, such as mental illness, chronic pain or fatigue, sight or hearing impairments, diabetes, brain injuries, neurological disorders, learning differences and cognitive dysfunctions, among others (IDPWP).
Raising awareness of invisible disabilities
During the COVID-19 pandemic, isolation, disconnect, disrupted routines and diminished services have greatly impacted the lives and mental well-being of people with disabilities right around the world. Spreading awareness of invisible disabilities, as well as the potentially detrimental— and not always immediately apparent— impact on mental health is crucial as the world continues to fight against the virus.
I live with invisible disability
As many of you might know, almost ten years ago, I was struck down with a rare disorder – idiopathic (cause unknown) Transverse Myelitis (TM). It’s normally caused by a virus but, despite the hundreds of tests, mine wasn’t, hence the idiopathic.
TM is a rare neurological disorder, a “neuroimmunological” disease of the central nervous system. It’s an inflammation of both sides of one (or more) section of the spinal cord.
TM involves inflammatory attacks in the central nervous system which damages the insulating material covering nerve cell fibres (myelin). In short, it creates lesions on the spinal cord that interrupt the messages that the spinal cord nerves send throughout the body.
Symptoms of Transverse Myelitis
The main symptoms of Transverse Myelitis are:
- muscle weakness mainly in the legs – so I can stumble and trip and appear drunk to others. My arms are weak too and I’ve dropped the kettle, pots and pans and many cups of coffee causing severe scalding.
- change in sensation (unusual feelings) in the lower half of the body. Mine occurs from just under my arms to my toes. It feels like a tight banding all the way down to my feet so even wearing shoes hurt. I do get odd looks wandering around in flip flops in the rain or cold.
- numbness, and pins and needles from the torso down
- heightened sensitivity to touch i.e. the feel of clothing on the skin might cause pain (allodynia). Even a single hair can cause me pain, like one unshaved leg stabbing the other! A light breeze blowing on my legs can be agony and a cold wind blowing on my torso feels like a hot water bottle in the area. All this can change each day and it’s never the same feeling every day.
- heightened sensitivity to temperature i.e. extreme heat or cold. My normal body temperature is now anything from 32.3 to 35.9° (even in the sun) which is really low compared to others at approximately 37°. This causes extreme perspiration (I do not sweat buckets, rather I perspire gracefully 😂) if the temperature rises due to any activity i.e. showering or cooking.
- losing the ability to tell the temperature of water or objects. This happens mainly on my left side but does occur on both sides. It’s really odd when I’m in the shower or the bath because different areas of my body feel different temperatures. And say when rubbing my hands together I don’t know which one is cold and which is hot. Common sense should tell me, but perhaps I’m missing that 😂 .
- pain (nerve and muscle). The nerve pain feels like I’m burning and tingling with sharp stabbing shooting around all my nerves. And the muscle pain — well, that feels like I’ve done 12 hours in the gym. I ache all over and any movement is painful.
- tiredness and extreme fatigue. Just showering and drying, together with brushing my teeth, or ten minutes of housework feels like I’ve done a days work already. Some days I have to lie down before I fall or faint with exhaustion and, trust me, this is no exaggeration.
- muscle spasms and twitching muscles. The twitching in my muscles feels like that twitch you get in your eye – painless but irritating. The muscle spasms can be more painful and can make my hands and fingers contort and I can’t hold a pen or cutlery properly.
- a general feeling of being unwell i.e. just not with it and my body feels like it doesn’t belong to me, it’s separate from my mind — that’s literally how it feels even though that common sense thingy tells me it can’t be.
- problems with the bowel and bladder. Suffice to say I’ve had many an accident both at home and in public. And please, don’t suggest those big uncomfortable incontinence pants — it’s just not happening! I’m 59, not 89.
The unusual feelings (paraesthesia) that we experience generally starts from the spinal area where the lesions are. My lesions started at C5-6 and L5 so areas like my arms, wrists and hands are affected. Imagine a horizontal line or band drawn around the torso i.e. from just under my arms, and that’s where the unusual sensations begin – so that, for me, is all the way down! Aaarrgghhhhh!
Mental health symptoms can be invisible
That’s TM in a nutshell. So, please try to understand how invisible illnesses can affect people, how difficult life is for them and for those around them i.e. their families and carers can have it tough too. I know mine do and sometimes I wonder how or why they put up with me. It’s not just the physical side but also the
- mental health side like depression and/or anxiety, suicidal ideation, hallucinations due to extreme fatigue, and
- sleepless nights
- sadness for the loss of the life I used to l used to live, the loss of the job I loved, and the friends who just moved on — without me.
- anger at not being able to do the things I used to and having to be cared for, cleaned up behind or helped to shower and dress
- loss of confidence makes me upset, feel useless, worthless and sometimes hopeless
- annoyance when people laugh if they think I’m drunk when stumbling or when people glare if we park in a disabled bay, like we don’t belong there…….
“You can’t understand someone until you’ve walked a mile in their shoes.”
Unknown
Have a little empathy and compassion and treat people with respect — always. Treat everyone you come across in the same manner. You never know what’s behind someone’s smile.
Okay, I’ve shared my experience of invisible illness……..
Over to you
Do you or someone you know have an invisible disability, or are you a carer? How do you cope with your disability or someone else’s? What’s been your experience with how people treat you or others with invisible illnesses? I’d love to hear your thoughts and I’m happy to answer any questions.
I totally agree that disability can be invisible. I’ve struggled with hearing loss since birth and I hate wearing hearing aids, and also I’m paranoid and live in my own world; when combined, I ignore people in public who say hello to me–people I know, even. And they take it personally and dislike me, and I have no clue it even occurred. I’ve tried warning people ahead of time, but then they just think I’m weird. Or worse, they get offended, as if I’m trying to tell them I don’t like them. [Facepalm.] I had a nice conversation with a woman who works at a business around the corner, and I explained it to her, and she got this offended look and said, “Well, hmmph. I’ll just say hello to your dog, then.” Like, there’s no winning.
Then I was at the ice cream shop several years ago, and the girl behind the counter pointed out that someone was saying hi to me–it was an employee at the pastry shop who I’d hung out with while eating my bagels on occasion–and I was completely, and I do mean completely, oblivious that he was even there, much less trying to get my attention. But in my defense, there’s a certain amount of cluelessness, because I’d told that guy repeatedly that I had hearing loss, and there he was, mumbling a hello to me, as if I’d hear that. Don’t get me started on the whole dynamic where you tell people you’re partly deaf, and they DON’T RAISE THEIR VOICES AT ALL in response. As if you’re trying to get them to sell their immortal soul to the devil rather than just speak up, for crying out loud.
Your description of TM sounds horrifying!! I’m sorry you suffer so much from it, and I wish there was a cure! It sounds dreadful!!
Thank you for talking about this, I didn’t know much about the condition/illness you have and the impact it has on your life.
I guess that is the point though, no one realises just what someone is going through and how lonely it can be, kindness and empathy are so important.
Im still learning about mine, lost a lot of confidence in my own abilities at the moment, questioning if I have misunderstood people and social events more than I realised. Lost confidence in speaking to people.
Thank you for your comments Anna, much appreciated. And yes, I understand how your illness affects most other things, particularly confidence 🙁
Sorry, didn’t mean to make it about me but was trying to explain what I meant
Hey, I know lol. Try not to worry too much my lovely 🙂 xx
So very true!
The mental health toll from chronic pain or other chronic illnesses shouldn’t be underestimated. Before I started blogging, I didn’t have a clue about TN and now I know a fair bit, thanks to posts like this that raise awareness. You’ve done a fab job with your post, fellow Caz! Ironically I’ve been too poorly, busy and way too far behind to do a post for Disability day, d’oh!
I hope you’re keeping as well as possible lovely. xx
Hi Caz and thank you for your input. It’s true, I think we all underestimate the impact chronic pain/illness has – until it happens to us.
Yes, I know how it feels being too poorly to even write a post for long periods of time, particularly when blogging’s one of the things we look forward to and keeps us going.
I hope you’re staying safe and well too my lovely twin Caz 😉 from the other Caz xx
I absolutely do not observe “says” – because when you look at it, it’s like the bloody RC church – every day is some day or another.
But here is a bumper sticker I used in a post a while back. I think it is absolutely necessary to be so blunt:
https://mrbumpblog.files.wordpress.com/2019/11/disabled.jpg
I know, there’s so many “Days”, most of which I don’t observe either – just the ones that have an impact on my well-being. Selfish maybe but I can’t observe them all lol either.
Love the sticker x
It’s funny, I have a post prepared about giving money to charity. Same thing. We can’t give money to *every* charity. There’s a quarter mil in UK alone!
Wow! So many! I’m not fond of giving to ‘charity’ as I worked for a few months at the NSPCC and didn’t feel like the money went directly to where it should have 🙁
My zebra (EDS) heart appreciates this!
Thank you and I was intrigued so looked up EDS. That must be really difficult to live with too, my thoughts are with you.
such good article and raising awareness so we all may be more empathic to what others are going through. wow, Caz I had no idea you were suffering from TM. I have a couple of clients thst have it.. all depends on severity and when it flairs up,. One has sen improvement. How is your RLS going? ❤️ Cindy
Thanks for sharing about TM. It sounds horrific.
There are so many problems and things we don`t know about ,so many people who are living with them and yet rising with all these obstacles. Thank for writing.
Thank you so much for your input. I know there are probably too many illnesses to think about all the time. Treating everyone with the exact same empathy, compassion, respect, and kindness would help and be nice for us all.
I remember once hearing about someone who had an invisible disability who would get dirty looks for parking in the disabled parking spots at stores and restaurants. Though they “looked fine,” they had actual physical pain that made the parking accommodation necessary. Since encountering that story, I’ve tried to be more open minded when I see someone in a disabled parking spot.
Oh I’ve seen the glares. We have a great new lanyard here that’s recognised in airports, train stations, shops etc – it’s an invisible illness badge. I hate wearing it but at least some people recognise it and don’t stare lol.
does that mean that all of have a disability hiding in our bodies? Because most people around the world are not “Perfectly Healthy”
You’re right, not everyone’s perfectly healthy. But if any illness/disorder, hidden or otherwise, impacts negatively on your daily life and you need support —- it’s a disability.
Thank you for your input, much appreciated. Caz 🙂
I have to admit that I had never heard of Transverse Myelitis until this post. Thank you for sharing and enlightening me. I suffer from PTSD caused from years of working as a Correctional Officer, but I am getting help.
Yes, that must have been a tough job too. I wish you well in your journey through recovery Mark and I’ll be reading to find out more 🙂
Thank you.