Saving Myself and All That Jazz

Why is it that just because we suffer with an invisible disease do we have to constantly prove our mental health status? Or it goes the other way round for people who ARE mentally unwell, they have to prove they are mentally unwell enough to receive help or understanding! It’s ludicrous!

Then there is the confusing matter that you may just be suffering with a mental health issue BECAUSE no one is understanding of the physical disease you were suffering with beforehand. Or the limitations of your health cause you to have a low mood. Or there is just too much going on in our lives to be able to wear a fake smile all the time. Mines the latter two. No one understands this. For no fault of their own but just because we were brought up to have a stiff upper lip and cope with anything.

This is where we started to go wrong. It is particularly noticeable in the war, when soldiers were killed for having Post Traumatic Stress Disorder or being shell shocked, as it was known then. Shot for not doing their duty because they were mentally unwell. Madness. There wasn’t any understanding of mental health illnesses in those days. Surprisingly, we haven’t advanced that much. We are yet to come to the point of understanding that invisible diseases can be physical too. For example, when I was in hospital, considering every person was very ill, the consultant shouted at the top of his voice at a young girl ‘YOU DO NOT HAVE CFS, YOU HAVE AN EATING DISORDER’.

You may ask why I use this as an example… Well:

A) is that useful behaviour for anybody or the people around to hear someone shouting so loudly that it echoes around the room?

B) is it an appropriate way to talk to someone who has an eating disorder? Her sobs could be heard for hours afterwards.

C) it turned out that the poor girl had Lupus that could have been diagnosed if people looked beyond what they saw

Complete misunderstanding of the very different illnesses. Scary thing is that this happened in the 21st century, so is not a thing of the past.

Previous to this year, I led a crazy life with one mentally and physically ill person and two mentally ill people and then me who was purely physical. On top of that add charity work etc etc. After a while, well for about six months, I knew I wasn’t coping like I used to. The main problem being I couldn’t get out of the situation due to being mainly housebound. It sort of infiltrated my World of One Room. Slowly but surely, my frustration of not being able to get away from my room or house was like playing Russian roulette with my mental health. It had coped just fine for 11 years but the twelfth year was the straw that broke the camel’s back.

People don’t believe that I am really struggling because I have always coped. I had never showed a ‘fake smile’. In someways, physically I’ve been through much worse, so why am I cracking now? This disease has gone on too long. At some points during the years, I’ve had support but they all left due to cuts at the worse possible time. Budget cuts don’t care about that.

For many months I practised the art of ‘The Fake Smile’ because I was terrified that now I wasn’t coping with life’s challenges, it would be used against me to say my physical disease was a mental one. It doesn’t seem to be ok for people who are chronically unwell to have low days and in my case many low days. The black dog doesn’t seem to mind if you have helped hundreds of people smile in a couple of days, he still sits there in the corner of the room and creeps up on you.

I’m no less strong just because I am struggling to take everything that is happening to me in. It is ok not to be ok. I mean to be honest, it would be pretty strange if you never had a day when you thought, “how am I going to deal with this?” The sooner that people become clued up to the fact that there is more than one element that makes us human, the better.

I have a song that totally sums up how I’m feeling. It is called Save Myself by Ed Sheeran and hits the core….

‘Before I save someone else, I’ve got to save myself.’