Time and time again I read these memes about how sick and disabled people should do everything within their power to live as ‘normal’ as possible. And time and time again I shake my head. 

It seems that the only real chance that sick, disabled or challenged people have of being valued is if they can somehow manage to achieve some level of mainstream normality. The closer the better. 

I constantly read messages and memes about how to “… Not to let your (illness or disease) take over…” As though there is no room for you, or reason for you, if you don’t fall within these acceptable limits. And that everyone should aspire to fit the normal level of ableness. 

I, personally, have had enough of these messages. I am tired of being valued and judged based on how able bodied I am or can be. I am tired of feeling guilty of falling outside the curve and feeling unwanted and unvalued for each time I give in to my illness… Like I am failing as a human being! Aren’t I a human being already? Aren’t I useful just as I am?? 

Although, on the flipside, able bodied people are encouraged to be unique and to think and live outside the box. Able bodied people want to stand out and be recognized for their individuality… Ironic really.  

The hard working woman or man wants to be recognized and respected for the busy and demanding lives they may lead. Yet … The sick, chronically ill or disabled person are expected to feel guilty for their challenging and demanding lives!!

They should not talk about it or try to illicit respect or draw attention to their plight… That would be just attention seeking and trying to evoke sympathy! 

I am tired of these double and unfair standards. And. I hope other chronically ill and/ or disabled people are too! 

Whilst it’s true that I don’t want my illnesses to define me, but they are also a part of who I am now, and I don’t feel that I have to feel guilty or try to hide them. I don’t have to wait for people to validate me or sit in some worthless limbo while I wait for a cure to come along! 

Yes. A cure would be wonderful and a great relief … and I would like one!  But it would be a relief to my pain and suffering and should not be seen as a cure for my existence and me being a burden and intrusion on the rest of the world.

A recent invitation to join in a 5k walk for my illness saddened me to the extent that  it assumes my illness will be bought to attention if I do the things that other able bodied people can do. Show how I am trying to be normal. Honestly. If I could walk 5 k I would! 

I wonder whose idea it was in the first place to ask people who find walking difficult and/ or painful, to sign up for a walk 5 k? Was it someone riddled with pain and struggling to move? 

And if I am going to put myself through pain and risk a terrible flare in my health I will do so in trying to do things with the people I love and doing things that I love!…

Not. Trying. To. Be. Something. I. Am. Not. 

Just as millions of others who do things in the pursuit of their own pleasures, goals and fulfillment. 

I must choose my outings carefully, for I must pay a heavy price for it. I am sure that many of my chronic brothers and sisters do also. 

I have read countless stories of wives who feel unwanted and useless, families torn apart and many driven to deep depression over feeling no longer wanted or worthy! Why? Because they aren’t the person they were and they may no longer cook or clean as they once did! 

I know countless of people who can’t cook and/or hire cleaners, but aren’t thought less of because in all other ways they may be ‘normal’ and their lives valued. A working man or woman who are invested in careers are allowed and justified in being unable to cook or clean as they are busy. While someone who is too sick or disabled is looked down upon for not doing the same things. 

I read so many sad tales of women and men who are in physical and emotional pain from pushing and struggling to do things which they feel justifies their existence instead of feeling validated for who they are. 

It’s truly heart breaking. 

But… There are approximately several hundred million people out there with chronic illnesses, disabilities and diseases. It is with this in mind that I suggest we start our own memes. Our own mantra. A new chapter in this journey. One where we lift our heads. We reject normal and we live our lives with dignity and respect for ourselves and our challenges! 

Gentle hugs, 

Trish.