DON`T ASSUME...

In my last blog I talked about some of the prejudice and misconceptions that I and many others face living with M.E.

The other problem that I face is the assumptions made by so many people regarding my illness. Myalgic Encephalomyelitis is hard to see and understand. Some may describe it as an invisible illness. 

Assumptions are often made according to my appearance.

But what does a person with invisible disability look like?

Assumptions are made about my ability and my disability. 

Some have tried to create disability levels or scales for M.E. 

Here is one example created by Dr David Bell  

I don't like these scales very much as this illness varies all the time and I don't think we can be placed in one box or disability level. Still they are a useful guide.  

At one end of the scale some people are unable to get out of their bed and never leave their home and at the other end some are able to work.

So no wonder it's hard to understand this illness. 

I guess I fall somewhere in between moderate and severe, depending on which scale I look at. Though I've had period in the past when I was at a mild level and able to work full time. I tried everything to stay in work and made a lot of adjustments to my work and my life. Unfortunately I was unable to continue working and had to concede that it was not longer possible. 

I wrote this poem from my own personal experience. Often I look well and it's hard for others to see my health problems and my disability. Even though I have proof of my illness my appearance can seem normal!  

Don’t 

Don’t assume because I’m younger than you

I’m healthy, strong and can stand in this queue.

Don’t think I have plenty of energy

At seventy-five you have more than me!

Don’t look at me as if I have no right

The last thing I want is to make a fight.

Don’t say that there is nothing wrong with me

My handicap is not easy to see.

Don’t be so rude, please show me some respect

It’s what I deserve and hope to expect.

Don’t treat me like a liar and a fake

This illness is for real, make no mistake!

Don’t be so cruel and cause me distress

When you say it’s nothing but laziness.

Don’t judge me when you don’t understand

I’m truly ill and need a lending hand.

Don’t tell me how I really look so well

It’s only those closest to me can tell.

Don’t you consider how hurt I might be

By your words and actions made carelessly.

Don’t assume that you have priority

I have proof of my disability!

Many people assume that just because I can do something one day that I can do it the next day. They may even assume that I have recovered! Generally, I'm only seen outside of my house when I have to do something, like go to a medical appointment, or when I have a relatively better day. Of course I'm not visible the next few days afterwards when I try to recover. 

Just because

I can do this

today

doesn`t mean

M.E. has gone

away

Just because

I look well and

OK

doesn`t mean

I really feel

that way

Just because

there is nothing

you see

doesn`t mean

That I`m fine and

healthy

Just because

you don`t accept

M.E.

doesn`t mean

you can treat me 

disrespectfully

Like many with M.E. I try to pace and rest. This helps me to manage and organise my day and any activities. It helps me to avoid post exertional malaise.  If I keep to my base level of activities I can hopefully avoid any setbacks or a relapse.

We all make assumptions in life. We assume that as we get older we will be able to do less. Recently I saw a story on French tv about a 105 year old  man who cycles 14 km a day! I`d be lucky if I could cycle even 1km a day. 

All I ask is that others don`t assume anything about me, show me some respect and some understanding.

Merci!

A bientot from the French Femme

xxx