Looking well and living with invisible illnesses

Today I interviewed Jonny Benjamin MBE, for the podcast I co-host (The Mental Health Book Club Podcast). In part of the interview we spoke about people’s perception of mental illness, that he ‘looked well’ so must be better.

This is the problem with an invisible illness, people assume if you do not look sick then you are not sick. I have done it, I think we all have. To see someone get out of a car parked in a disabled bay who ‘looked well’ mentally question if they were ‘really disabled’.

But I have an invisible illness, actually I have several; Fibromyalgia, chronic migraines, depression and anxiety. This means that I may look well. I can still dress, clean my teeth, take a bath and smile when I need to. Not every day, but those days I usually stay at home, where you will not see me. Unless you deliver takeaways, are my lovely postman or an Amazon delivery driver.

Saying that there are the in-between days, days which mean I am up and in life but not feeling great. It could be post migraine symptoms, depressive episode or my anxiety running a muck. Days I go into school (work) and have to smile and teach even when I want to run and hide. Those days I might ‘look well’ and be able to act ‘well’.

I just think we should remember that we do not know what is behind closed doors. We cannot assume people are well and healthy because they smile at us. I know I have got very good at acting well, I can fool even my best friend for quite a while. For when I am ready to share and ask for help.

I even have trouble with bathing; pre-verbal childhood trauma which has led to an illogical fear of water. But I make myself keep clean and bath as society expects. Also because no one wants to be the person who smells.

My parents wash occasionally and brush their teeth even less frequently. I have had to ask my mum to brush her teeth before we go out. So I do have a fear of smelling or having bad breath. So I learnt no matter how I felt I was to look ‘fine’.

My mum is someone who is always feeling worse than you are, ever. I was not really asked how I was and looked after when I was sick. If I was off sick from school I was given a lost of chores to do. Mum also likes to moan about her many illnesses, she is ill. She is living with cancer and also has high blood pressure, high cholesterol, type two diabetes, mobility issues and is morbidly obese. So she does have a lot to complain about, but she has been moaning even before she had all of these.

It was like my illnesses were not real. Therefore, now as a grown up I have had to learn to ask for help and show people how I am really feeling. To no longer just say ‘fine’ all the time. It is ok to say ‘I am not ok’ without seeing a moaner, another mother linked fear of mine. I am more open about days I am not feeling well but doing what I need to do, work.

I think I fear too much sympathy. That look that people give you when they feel so sorry for you. I hate it, it makes me feel ill. I am a strong independent woman. I do not want to look weak, I am a perfectionist, and I am stubborn. But I am also learning that I need to be open to help and support. To be honest to break down stigmas and let people learn about the real world to me and others who also suffer.

So here I am, sick but well in my life in a mental world.