Life with an invisible illness

 

I love superhero films and I’ve always found it fascinating that superheroes some how have the ability to clock their powers and seem ‘normal’ to others. I’ve always thought how incredible it would be to have a  superpower like that on top of all the other cool stuff! 
Superhero running fast

Me, back in my superhero days!

Yet for the millions of people who suffer from invisible illnesses such as arthritis, fibromyalgia and mental health conditions, the hidden symptoms that we have leave us stigmatised with a constant need to explain ourselves to others that often doubt our health problems.
Suddenly that clocking ability doesn’t seem so appealing! 
 Because we look okay on the outside it’s a common misconception that we are faking it or that we are exaggerating things because we are lazy. We are liars. 
Well if that’s the case then a huge number of people who need to go into acting because they’d win an Oscar in no time at all!
Oscar award cartoon
Angeline Jolie, Jennifer Lawrence, Tom Cruise and the high-flying A listers should be quaking in their boots!
Angelina Jolie cartoon drawing

Move over Angelina, I’m ready for my close up! Lol

Perhaps we should band together and make a film about chronic illness. When you’ve watched a person crying uncontrollably at 3am because they are exhausted and in agony perhaps you’d think differently. Especially when you realise this isn’t a one-off, this is a frequent breakdown when chronic pain takes complete control of the body and the mind. More often than not this isn’t something that’s got a quick fix. No surgery or medication that can make it better. Things may get progressively worse over time. 
Just because you can’t see something, it  doesn’t mean it doesn’t exist! 
The amount of times I’ve had to explain my conditions to complete strangers would surprise you but the reasons why would shock you. 
Why are you using your grandparents scooter, disability is nothing to laugh about. You should not be making jokes about it’
A few years ago I was kindly loaned a mobility scooter to help me get around more. My younger two children were apprehensive about the scooter so I thought if I let them sit on my lap and help me use it then it would be less stressful for them. So we ventured out to the local shop for some sweets for them.
 As a man walked out of the store those comments were what led to me not using the scooter again, his harsh, judging tone and questioning pushed me back into a depression and not wanting to leave the house. 
 Sometimes it’s not even words that can sting. I’ve been using a wheelchair when I’m out for about a year now. It’s helped me so much and I’m slowly getting used to having to rely on it but there are some things that make it harder than it needs to be.
One lady in wheelchair with group of able bodied people
 Curiousity is part of human nature but the amount of stares I get whilst in my wheelchair is crazy. It’s like people are doing a full body X-ray with their eyes, desperately trying to figure out why I need to use a wheelchair.
Either that or they stare at me with this real pity in their eyes. I don’t think they have bad intentions and I’m sure I’ve been  guilty of it too but seeing it only highlights the issue yet again and makes me feel like hiding at home again!
They’d never just out right come over and ask me why I’m using a wheelchair but they just gaze at me intensely which can be quite hard to deal with, Especially when my kids notice them staring aswell. That’s what upsets me most because seeing their mum need to use a wheelchair to get around can’t have been easy and I tried really hard not to stress them out with it.
 My youngest son loves sitting on my lap or balancing on the front of the chair like a surfer. My older two enjoy pushing me around having full charge of wherever we go in shops etc or seeing how fast they can push me before I get scared I’m going to fall out of the thing!!
I’ve tried to make it as ‘normal’ as I can and try to get the kids to see the fun that we can have So people staring all the time  just makes things more uncomfortable. Please stop! 🛑 
Stop written on road
I have a blue badge which enables me to park in disability parking bays. We always display the badge correctly in the car and it actually has my photograph printed on the inner side of the badge to prove that it’s my badge. I use a wheelchair most of the time to get around but I also use a walking stick if I’m walking, which sadly  is becoming more rare as time goes on! 
Here are some of the comments myself and my partner have had to deal with. I might add this is often in front of my children. I’m not a confrontational person and due to anxiety and depression I lack confidence so I don’t really say much in these situations.
Disabled car park space marking
 I’m usually rather shocked by it aswell despite it happening quite often so I thought I’d also include my honest replies as I wish I was confident enough  and perhaps held the strength to fight for myself a bit more! 
 
‘Don’t you know it’s illegal to use your grandparents disability badge, it’s disgusting behaviour’  
I don’t think this really warrants an answer because I actually find that suggestion disgusting but I do have some thoughts on the matter. The world seems to be fixated on the belief that only elderly people have disabilities and it seems like an immediate assumption that a younger person is exploiting a grandparent. It shows that there is a huge lack of knowledge about chronic, invisible illnesses and who they affect. 
‘what makes you qualify for a disability badge, there’s clearly nothing wrong with you?!’
What makes you qualified to judge whether I have a health matter that allows me to use a blue badge?! Are you a doctor that can diagnose my health from just looking at me in the car? Do you have the authority to question where I park? Nope, I didn’t think so. 
 
Could you show me the photograph on the blue badge to prove that it’s your badge?’
Umm no, you’re not a parking attendant, nor a police officer and I don’t have to show you anything. What authority do you have that I have to prove that to you? Also it’s a terrible photograph so if you’d like me to show you some cute selfies with Snapchat filters I have a ton of them?!! Maybe you could show me some of your photos as we’re obviously sharing! Lol 
Reserved parking disabled sign
You should not be parked here, it’s a disabled space’
This one usually occasions after several knocks on the car window as one person bravely approaches after staring and discussing it in a group. They knock on the window right next to the windscreen where the blue badge is correctly displayed might I add!
This is a great way to meet other parents at your child’s school.
 I try to be funny but this actually happened to me on a day I felt brave enough to collect my child from school by myself and it hit me really badly.
 
I was overjoyed that I’d managed to pick up my youngest son from school and we were happily giggling deciding what song to sing along to on the short journey home.
 Mother and son cartoon
I was about to drive away and I’d literally just put my blue badge away so it didn’t slide across the dashboard. After it happened in hindsight I realised that this group of people had stood in front of the car staring and discussing the matter for several minutes whilst the badge was displayed, then as soon as I put it away I was approached which made it more strange!
There were suddenly several  knocks on my window as this woman bent down to get my attention. I opened my window totally unaware of her intention, I thought I might have dropped something. She told me that I’d been parked in a disabled bay and had no right to use up the valued space. I told her that I was about to drive away albeit I had the badge displayed.  
I got the badge back out to show her because I still had my hand on it as I’d been putting it away as she knocked. She didn’t seem satisfied and muttered about not looking like I needed it.
 This one hurt particularly badly because I’d been so happy to collect my son by myself, even if it was just one day. I’d done it. We were so happy.
 I actually drove home sobbing, embarrassed, ashamed of my health issues and it left me feeling  extremely uncomfortable driving again. It took a long time to get over the pain of that situation and it’s left emotional scars. I don’t drive much anymore and I feel very anxious at school events, even picking up my son at the end of the day. I wouldn’t go by myself again either. 
Woman crying cartoon
The most bizarre thing was that I later found out she was a blue badge holder herself so whether she was just annoyed I’d taken the only disabled space I don’t know! 
 
‘There might be something people with real problems that need that disabled space’
what are classed as ‘real problems’ ? What makes you qualified to decide on this? How do you know what my problems are whilst I’m sitting in a car? This comment baffled me! 
Caring about the right things 
I understand that some people feel that it’s important to play an active role to tackle matters within their communities. I applaud that they care so much about things beyond their own lives. But sometimes people can get too caught up in things and in extreme cases they are referred to as Social Justice Warriors!
Man with loud does just shOUTING ‘ACTION’
But it is very clear that people’s care and focus need to be put into the matters that truly need it. How can such passion make the greatest positive impact?! That’s the tricky bit I guess! 
 In terms of health matters it can be hard to gauge whether a situation is genuine or not. Not every illness is visible. So perhaps unless you are a qualified professional that can judge a persons health or perhaps someone like a parking attendant or a police officer than I suggest you really think things through before you act. Is it your place to intervene in a situation that in truth, you don’t have the full facts of.
I find it hard to explain my own problems but i believe If you turned me inside out you’d see a very different story. If you walked in my shoes for just one day then perhaps you’d get a clearer understanding of things. You’d know what it’s like to feel pain as naturally as you breath. To have an invisible illness interfere in every aspect of your life. To have your health judged and questioned at every turn.
Sit down, be humble!
Obviously it’s impossible to live someone’s else life, to feel their emotions and to hear their thoughts but there are things we can all do to help one another. There are some  important aspects for us all to consider in everyday life. Let’s be more humble, help each other be happier. Just be a little more considerate and kind to one another.
Man helping old lady with a walking stick
You never really know what that person is going through so perhaps take a breathe, rethink things before you question them. Why not offer a smile or a kind comment instead of something negative.
Be kind graffiti in chalk on playground floor

Photo from Pixabay

Always consider  the consequences of your actions and rather than attack one another why not try to support each other more. Just be a bit kinder … xx 

**All of these brilliant illustrations and photos are free stock photos from Pixabay

Leave a Reply