Living with an Invisible Illness

March 07, 2018

Mytheapyapp is an app designed to help patients during medical treatments, including scheduling medication, to chat rooms and blogs.  Their recent blog about people living with invisible illness included an honest account from a friend of Calvert Trust Kielder - Victoria Bartle.

In the blog Victoria writes

“Personally, I find that living with an invisible illness is as much of a challenge as living with any other disability or chronic illness,” says Victoria Bartle, who blogs about her life with primary biliary cholangitis (PBC), an autoimmune disease that attacks bile ducts in the liver.

"But then you have to add on top of that having to constantly explain and advocate for yourself because people generally don’t understand something that they can’t see, or that they’ve never heard of before. I’ve found that in every new social situation I feel the need to explain why I use a walking stick or walker, why I walk really slowly, use the disabled toilets, always take the lift, and why I’m always fidgeting, changing position, or asking for a specific type of chair.

So, I explain my conditions. I explain that I’m in constant chronic pain and suffer from chronic fatigue. I explain that I get brain fog and might stumble over words or forget what I’m talking about. I tell everyone that I can’t really function outside of the hours of 11am - 3pm because of fatigue, and I usually go to bed about 6pm, so doing something in the evening just isn’t going to happen. I tell them that I need home care now, and that I’ve had a cleaner for years because I just can’t manage to do everything, and I’d much prefer to spend the energy that I do have on doing fun things that make my life more liveable.

It’s a hard thing to live every day like this, but I’d prefer to explain, educate, and inform those I meet about my conditions than feel as if I’m being stared at, judged, and verbally challenged for being ‘unusual’ (which happens to friends of mine with invisible illnesses all the time).

It means that I get to explain that loads of people have invisible disabilities, that we should all be a little less quick to judge each other, and just be quicker to be kind.

I find that talking to people about my health makes it easier for them to treat me normally. I can ask for help without feeling embarrassed because people understand why I need it and are therefore fine about helping out. Knowledge and understanding is key to us being able to interact with society on the same level as everyone else. I don’t want to be labelled as ‘lazy,’ ‘work shy,’ or, worst of all, to be seen to be ‘faking it’ which seems to be the prevailing opinion of lots of people when it comes to invisible illnesses. The media portrayal of people on benefits does us no favours at all, so I think that we have to advocate for ourselves and create our own opportunities to educate others to not simply look at face value.

We all have things going on, we all have our own personal challenges, so let’s help each other through them instead of insisting that you can only really be sick if you have an obvious, visible, or understood condition.”

To read the full blog and download the app please click here.

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