They are the light around  the dark cloud constantly  shadowing our lives in a  million minuscule ways.

I get it. I really do. The value of a positive inner-voice and outlook can’t be put into words when it comes to struggling through life crippled by one symptom after another, after another.  

After another...

Being happy in a body that produces constant pain isn’t easy – but it is possible. As long as you’re happy in your own head. 

If you’re in pain or ill and the space between your ears is an unhappy place to dwell, then life will be forever a living hell.

So, I get it. The need for positivity.  What I grapple with, though, is the idea that we are ‘improved’ somehow by our suffering.

We are made kinder, more compassionate.

We cultivate patience, resilience, determination.

We also have to get tough.

We must enforce boundaries, learn to put ourselves first and say no when it’s all too much to cope with and we just need to let

our bodies rest. 

We must, while fighting a ubiquitous guilt and our bad health, look after us while developing an empathy for others. 

Hanging

Tough

Apparently, according to these features, all of these actions are a ‘blessing’. 

They are the light around the dark cloud of pain, constantly shadowing our lives in a million minuscule ways. 

But, aren’t these qualities and habits things that every human should possess and practice, or at least seek to extend to the people and creatures around them anyway? 

Ehlers-Danlos and its  

companions have not  

made me more   compassionate. 

They hardened me. 

No silver lining there. 

Ehlers-Danlos and its companions have not made me more compassionate. They have made me build and enforce boundaries that should have protected me decades ago. They have hardened me. 

No silver lining there. 

Using public transport all my life and being stuck in unhealthy situations taught me patience. 

No silver lining. 

When my parents would try to put the toddler me in to the car and I didn’t want to go, I’d put a foot each side of the door, lock my little bendy knees and scream. At the age of six, I told my father I was going to get a degree in Law or Journalism (which I did). Safe to say, then, that I was born determined. 

No silver lining. 

My constant and agonising pains have made me tougher. But I was always tough inside. People I have loved most have been ejected from my existence and an old friend said he envies my ability to ‘turn-off’ my emotions. I can’t, of course. There is no switch, though I admit to the clinically cold parts of me that emerge once bridges are burned. 

This ability to stare anyone in the eye and defend my corner came from my son being born, from being a single-mother and having to speak for him because that’s a parent’s job. It was not birthed by my illnesses and disabilities. 

No silver lining. 

The informative, primary parts of my childhood were political, emotional mazes to navigate. There was divorce, death and many other events to introduce me to grief, loneliness and loss long before my aches arrived. I’ve always self-soothed. It’s nothing new.

No silver lining. 

When it comes to long-term, debilitating, intractable illnesses that control all and every aspect of life, I don’t believe there are any true silver linings. 

Aluminium linings?

Aluminium

Linings

Glowing edges that for a second, just a split second, shine and stun?

Sure.

They exist. 

Break it down, though, and they’re a myth too. 

'Silver Linings' ignores the

trauma of the weeks, years and decades we spend alone, suffering...

This concept also ignores the trauma of the hours, days, weeks, years and decades of our lives that we spend alone, suffering. 

It dismisses the dreams we have been forced to forget, the careers we can never have, the children we will never hold or that we lost due to our illnesses, the food we will never eat, the walks we will never enjoy, the school-runs we missed, the memories we’ve never been able to make... 

It disregards the friends who left us lonely, sad and angry when they silently side-lined themselves because of our physical restrictions.

It invalidates the allegations and abuse we endure from medical professionals, and the insults and offhand comments from strangers that we face on the rare occasions we are able to go out, walk, eat, drink, move, wash our hair, put some mascara on…

It negates the fear we go through at the hospital, of new and sudden symptoms - is that a bleed? Is this it? - and the fear of what our future holds. 

Or doesn’t.

We can be remarkable, those of us struck down by illnesses. The world and internet is full of organisations, groups and networks set up and run by people who have the conditions they are working passionately against. We come together to support and share our journey and knowledge. 

We come together to tend one another’s broken wings and we have moved mountains in the real world. We build friendships that get us through the blackest of times based on shared suffering and loss.

There is a beauty in this, which shines through the tragedy. 

However, no-one will convince me that there is any benefit to having something like Ehlers-Danlos and a truck load of other junk. 

No-one will ever have me agree with the idea that there are ‘blessings’ to having been housebound for most of the last 12 years. 

Had I not already established a positivity within myself, I would not be here writing this. 

To talk or read of silver linings is as much use to me as a nugget of Fool’s Gold to sell to pay for the treatment I need...

...It's as simple

as that.

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