It’s invisible disabilities week 2022 and as always, I want to shine a light on how mine affect my life and those around me so let’s chat.
I first got sick in university, headaches constantly making me miss work and making it hard to do well in my schoolwork. Then when I graduated, they got worse, missing one or two nursing shifts every set and gaining a lot of flack from co-workers thinking I was just trying to dodge work.
But when you cannot see properly, and you are throwing up its kind of hard to do a nursing shift!
Then one day, at a festival, my lower left leg swelled up and became very painful, I struggled to walk, and my foot became numb. I went into work determined not to let it stop me but was told I couldn’t work on the ward while I was struggling to walk. So, I lost the job and with it my home and had to move back in with my parents.
I lost my home, independence, friends, and boyfriend in a matter of weeks, I fell into a deep depression and even lost my new friends because of that! I felt a nuisance to my parents who had been looking forward to me moving out so they could live their lives.
Honestly, as I look back at that time, before any diagnosis, when every test came back negative, and people looked at me as a faker I marvel how I survived it. I didn’t want to at the time, but something kept me going and thankfully I met my wonderful husband and my life changed for the better.
I have been through the process of looking for answers many times, at one point I was diagnosed with multiple sclerosis. However, when the scanner quality improved, they realised I had been misdiagnosed and I had to go through the whole process of looking for answers again!
I’ve spoken many times here on my blog and my YouTube channel about my chronic illnesses and how they affect me. But I think the things that have got to me the most have been other people’s perceptions of me after I got sick.
It’s like you go from being just a person, to being someone who is stared at, who finds places impossible to go to because of accessibility issues, and someone who is a faker. Invisible disabilities week 2022 is needed because it hopefully changes people’s idea of what a disabled person is.
Yes, I use a walking stick in the house, but yes, I also use a Walker that turns into a wheelchair when I am out. This isn’t to get sympathy or because I am faking, but because I cannot walk very far without extreme fatigue and pain that could last weeks.
My whole life is spent juggling pain and fatigue levels, trying to find a way to get the things done I need to without push my body passed what it can cope with. This is especially difficult now we live with my mom, and I am her carer.
Being a disabled carer can be difficult, there are times when I would love to stay in bed and fully rest but she needs me to help her. I never begrudge needing to help, but my needs, my pain and fatigue often get overlooked and seen as not as bad and hers.
My mom has multiple sclerosis, and I have 8 I think invisible disabilities, yet people seem to accept hers as being worse because they can see how it has affected her more easily. I still get the odd comment about mom being worse than me like it’s a competition because her illness is more recognised by society than mine.
That is why invisible disabilities week 2022 is so important, the more we talk about our illnesses and how they affect us the more people (hopefully) will understand. I hope this blog post made sense, and I hope it helps you to see why we are talking about it so much on social media. It’s time that perceptions changed.