Without Wings, the Manx Autoimmune Trust. Our story starts here…

Imagine this scenario.

Perhaps it seems only a short while ago that you were fit and healthy and strong. While you might be older, you could easily be in your twenties – or even younger. It could be you’ve been through a tough time lately and you know you’ve got a bit burnt-out. However, you could equally have been fine and enjoying life – looking forward to a new opportunity, holiday or social engagement.

Now though, you’re plagued by debilitating symptoms.

Maybe your fingers and knees are swollen and tender, or you can’t bend your back. Pain and fatigue are off the scale. In another scenario you might have constant urgency, cramps or gut pain. In yet another, you’re experiencing tingling, numbness or sudden weakness in your limbs. It’s alarming.

Whatever your symptoms, you’re worried, so you visit your GP. You’re only supposed to discuss one issue at a time though and you’ve multiple. So you go multiple times – which makes it tougher for them to connect the dots.

Next come blood tests and waits – for scans, for hospital consultations. If results are inconclusive, you start again.

In many scenarios, for many autoimmune conditions, by the time you get to see a specialist, it’s likely you’re exhausted. If you’ve taken extensive time out from work, it’s also possible you’re feeling the pinch.

In such cases a diagnosis can almost be a relief because there’s no getting around it – being sick costs: time, money, relationships, function.

The only problem is, a diagnosis isn’t the end, it’s just the beginning…

‘We are Without Wings. We are a small, voluntary organisation campaigning for real, practical change.’

The Autoimmune Invisibility Cloak

This is the story of Without Wings and why we came into being – because if the above sounds tough, it is.

Autoimmune diagnoses are tricky – unpredictable in how they emerge, forever fluctuating in how they present. Some are deadly without fast medical intervention, others ‘progressive and incurable,’ or ‘relapsing and remitting…’

Some steal in, cause havoc, vanish, then re-emerge when you’re least expecting. Others require a lifetime of aggressive medical intervention and constant flares that completely upend your life.

In almost all cases, they’re disruptive, misunderstood and their true impact on minds, bodies, souls and finances, can be invisible…

Which is possibly the worst bit, because in a world where value is increasingly being placed on economic contribution, this creates a worrying culture:

Ableism.

Which is really what Without Wings was set up to address…

‘When I was first diagnosed I thought my life was over. Instead, rheumatoid arthritis changed my life for the better. I now control my illness with medication but I also eat well and look after my body. I didn’t do this before.’ Phil S.

‘Education is the most powerful weapon which you can use to change the world.’

Nelson Mandela.

Disabled by an Ableist World

Because you see, it doesn’t matter if ableism is someone directly questioning your health reality, a dismissive medical practitioner, or a government policy that subconsciously damages disability perception. Without going into the esoteric, (though yes, if approached compassionately, viewing illness as an opportunity for personal growth, can be helpful), when grappling with the reality of day to day survival, you’d probably rather just be well.

Which is where we step in to help…

Compassion and the Why of Without Wings

Without Wings began way back in 2016 as a charity specifically for people affected by autoimmune joint conditions such as rheumatoid, psoriatic and juvenile arthritis, ankylosing spondylitis and lupus. 

This was because that was our experience, and because autoimmune arthritis accounted for only 20% of all ‘arthritis’ diagnoses.

We therefore knew, first-hand, the emotional overwhelm of trying to navigate life with a diagnosis that was forever being confused with something it wasn’t.

Information was similarly muddled and the resultant ableism was rife. Though medical support made a huge difference, it could be unreliable. And so it seemed that living life with a disabling condition that didn’t fit social expectations was going to be bleak.

We didn’t want to live in a society like that, so we thought we’d be the change we wanted to see – and Without Wings was born.