There are many challenges that having a long-term chronic condition brings. Some of these are physical, some are psychological. Some of these can be managed, and others are completely out of your hands. One of those that is beyond our control, and one that I find most difficult to deal with, is the invisibility of my illness.
If you were to look at my photos on social media, or glance at me on the street, or in the workplace, you would never know that I’m unwell. On the face of it I look like a happy, and healthy thirty-something living her life. Dig a little deeper and you’d soon realise I’m far from it.
What people don’t realise is that those fun things I do, happy social media posts, or walks down the street are all occasions when I feel ‘functional’. I’m not using the term ‘well’ because I rarely can say that I feel ‘well’. Rather, I use ‘functional’, meaning I can just about carry out basic functions with some degree of difficulty.
When I’m at work, doing the shopping, or out with friends, people don’t see the several days after when it’s all proved too much and I can’t get out of bed. Or, me collapsing into bed when I get home from work and not moving until the following morning. Or, telling my husband I just can’t speak to answer his question about what I’d like for dinner because I feel so awful. They’ve not seen the several days prior to an event where I’ve agonised over if it will be possible. They can’t see that behind my ‘normal’ looking face and body that a trip to the supermarket is a struggle.
The reason I may look OK when I’m out and about is because I’m only out and about on days where it’s physically possible. If I’m at my worst then I’m not going to see people. The result is that when I do venture out I’m often met with encouraging choruses of ‘you look well’. I look well because I’ve managed to get out of bed, wear something other than pyjamas, put my make up on and smiled. I try to escape my illness for an hour or two and pretend I’m OK as it’s easier than trying to go into the details of how unwell I really feel.
It’s difficult enough trying to explain to the people who really care about you how you feel and the impact it has on your life. But what’s particularly hard is the attitude I’ve faced from complete strangers towards my illness- because it’s invisible.
I have a Blue Badge due to the mobility issues I had prior to being diagnosed with M.E. Again, these are generally invisible- I don’t use a wheelchair or a stick. My husband often props me up instead! The badge has also been really helpful to my M.E as walking long distances makes me tire very quickly.
I’ve had occasions where I’ve been verbally abused in car parks for using my Blue Badge. This abuse has always come from other disabled people. I’ve been shouted at and told that “You don’t look disabled”. To which I’ve responded “You don’t look ignorant or prejudiced. You shouldn’t judge a book by its cover”. Even loved ones have expressed some concern about me using my Blue Badge when I’m with them since I’m ‘less deserving’ than other disabled people. I also experienced a situation on the London Underground where a man took issue with me for 15 minutes and repeatedly called me a word beginning with ‘C’ for sitting in a priority seat.
Situations like this are not just emotionally upsetting but can really set me back from getting out on those days I can function. Whilst it’s encouraging that there is increasing acceptance of invisible illness and disability from organisations- such as badges for London Underground users to wear, or changing the signs on disabled toilets to include invisible illness- there’s a long way to go to change people’s attitudes towards invisible disability. Perhaps then, when it’s taken me two days to find the energy to go to Sainsbury’s, I can use my Blue Badge without a dirty glance.
M.E. and me 