For many, having a name for the health issues they are facing makes a huge difference – after all, a boxer wouldn’t get in the ring without knowing their opponent; for who they need to train and mentally prepare to fight.

What is talked less about when stuck in ‘limbo-land’ awaiting diagnosis is the lack of support, access to specific help and, most important of all, targeted treatment for the issues you are experiencing.

I was recently inspired by Brianne Benness‘s ‘No End in Sight‘ podcast and writing after a tweet I wrote using her #NEISVoid hashtag took off (see below). I wanted to write a piece that speaks for those of us in that place of ‘awaiting diagnosis’ whilst also raising awareness of what we go through during this time for those who might not understand.

This is my experience of currently being trapped in the awaiting diagnosis void.

The void is a lonely place

That place between the onset of symptoms and official diagnosis is one of the darkest places someone with a chronic illness will ever go on their journey.

It’s where the darkness of manifestations of an issue (whether that be pain, fatigue, physical disability etc.) and the light of answers meet. And, much like the nightscape photograph I took recently to accompany this article suggests, the depths of that darkness is immeasurable. We forever walk towards the light on the horizon, but each appointment, test and consultation seems to move those answers further and further out of our reach – and with it, slowly evaporates our hope.

Like many who live with chronic illness, I have spent years in that void. Even now, after 25 years of living with arthritis, I occasionally find myself situated back in that place as my condition evolves or my autoimmune disease finds new ways in which to attack me. With each visit, like an ageing boxer, despite the experience and scars gained along the way, my appetite for the fight diminishes.

You don’t know, unless you know

One of the things that makes this such a lonely place in which to find yourself is that the average person will simply not understand. They cannot grasp what a minefield the awaiting diagnosis void is. Again, referring to the picture as a visual representation – you can see the diagnosis as an end goal, but you cannot see the steps along the way. The waiting, the disappointment, the red herrings that trip you up, the painful procedures and again, the waiting…my word, the waiting!

For context, my Juvenile Idiopathic Arthritis took two to three years to be diagnosed – when I developed painful rashes and complications later in my twenties; another two or three years to identify it as an evolution into Psoriatic Arthritis – even though it was pretty clear to the layman what it was given my medical history.

So although I have lived with arthritis for a quarter of a century – a 5th of that time, I didn’t have any answers or even a name for what I was dealing with, even though at times, it had put me in a wheelchair.

Imagine, if you can, being in a car accident but not knowing why you woke up and couldn’t walk for three years – or getting a lump but your family not being informed that you had cancer until a year after you had passed. It’s not acceptable, but unfortunately, the delay between onset and diagnosis is notoriously long in the autoimmune world.

The void is a painful waiting room

People are often so focused on ‘what’s wrong with you?’, why do you look, move or behave ‘differently’ or ‘what’s it called?’ that it is easy to forget the first leg of your journey that brought you to how you present today.

Its completely underappreciated how difficult, worrying, upsetting and painful this period of undiagnosed poor health can be. It is also in this darkness where people are most likely to lose their jobs, have serious financial hardships, experience the breakdown of relationships or worse, than any other time living with chronic illness – I know, because I have been there before and am in this place again today.

The whole time you are in this status quo, you are not receiving the appropriate support; medication and treatment are prescribed alongside an unhealthy dose of guesswork and a sprinkling of trial and error – most doors are locked shut until somebody gives it a name and more often than not, you have to get sicker before the process can move forward.

It’s the worst time.

My current experience

Regular followers of my work will know that I have a couple of forms of arthritis and have struggled with my mental health at various points due to the results of living with this for most of my life. However, what’s lesser known is the undiagnosed issues I have been experiencing for several years now. It’s been so long-running in fact, that I cannot be any more specific than say it’s been over the last 5-10 years.

I’ve talked a lot over the last year about how everything gets attributed to your chronic illness, and the length of time this secondary issue has gone undiagnosed is a perfect example of that. So, let me give you a brief overview.

What started with pins and needles in my hands and feet evolved into a numb foot in which the sensation tracked to halfway up my shin. Later, stinging across my ribs like I was being stung by wasps or that spiders were crawling over me. Today, my foot is continuously painful despite all scans and evidence of arthritis activity being clear and two or three times a day, my foot utterly feels like it’s been placed in hot water. All of this on one side of my body.

Alongside this, I have what I can only describe as ‘flares’ due to the similarity in nature of how my arthritis comes and goes. What starts as a massive wave of fatigue, fatigue of which I have never experienced before all of this, completely floors me. The simplest of activities such as putting shoes on or changing my toddler’s nappy are exhausting – and I mean ‘just ran a personal best 10km’ level of exhaustion, for no obvious reason.

These flares also present with blinding migraines on occasion, I lose my voice when I talk, get clumsy, get brain fog, feel faint and have regularly had falls such as the one down the stairs a few weeks back.

I can’t explain it any better than that, it’s the weirdest thing and trying to communicate that and sound sain to doctors when you have a history of depression is as challenging as it is infuriating. Especially when I tend to get depressed with these flares – but I continue to argue that it’s the tiring experience of these symptoms over several years that make me depressed, not the other way around.

Wading through the fog

Over the years, whilst I have been in this awaiting diagnosis waiting room for the best part of a decade, I have had the most frustrating experience trying to explain how it’s different to my diagnosed chronic illness. However, everyone from your GP, friends, family and even my Rheumatologists have tried to tell me how my experiences are ‘just arthritis’. As somebody who’s well-read on their condition and advocates for themselves, it’s maddening.

Due to these issues, I have had trips to A&E, been admitted to stroke wards with suspected TIA’s or meningitis, collapsed at work, had to stop my car mid-journey as I couldn’t feel the pedals, the list goes on.

This issue has impacted every aspect of my life when these flares hit – yet, with each hospital trip, spinal tap, scan or test, just as I start to gain some traction – such as when Drs found unexpected protein in my spinal fluid – the flare ends, I return to normal health and it gets put down to my arthritis or a mystery infection. I have to return to the start and wait for another flare, another six-month wait to get back into a Neurology consultation followed by another long wait for a test in which results will never be acted upon.

It’s a situation that’s simply not compatible with family-life, work-life; any life. You never know when you are going to be struck down again and, depressingly, even during the good times, it has to be a part of your decision making, so remains a constant reminder of an unresolved situation. A constant reminder of the unknown sentence you face in the void.

The unseen impact of the void

For the first time that I can remember, I am currently ‘confirmed arthritis active disease-free’.

It’s taken since April, and a lot of tests and scans but my rheumatologists are finally confirming that this issue is not my diagnosed arthritis. They are referring to it as either ‘a pain problem’ caused by the effects of years of lengthy arthritis flares and damage or ‘something neurological’. I’m putting all my chips on the latter.

I understand that pain pathways can get confused or nerve endings damaged after a long period of exposure to pain – but I’ve never had arthritis in my ribs, arthritis has never made me lose my voice or fall over because it was as if one leg forgot how to walk, arthritis has never given me migraines, the likes of which are so severe you could pass out.

A name for all this would be great, but my primary concern is what isn’t talked about enough – that constant existence of living in fear. Fear that this could be something serious, something that is doing irreparable damage, fear that I don’t know what tomorrow looks like because I have no idea if I wake up with these issues or without. You can’t even book a holiday when you don’t know what tomorrow brings.

What’s worse, is that this whole time, it’s completely untreated. Yes, Drs have thrown a few things at it to see what sticks and recently Gabapentin seems to help to suggest it is neurological but apart from that, it’s been almost a decade of getting on with it. Trying to hold down a job. Trying to be a husband and a father when all you want to do when it gets to the weekend is sleep because you’ve given everything to get to 5pm on Friday.

I’m lucky, I’ve had enough good people around me to support my time in the void. Despite a lot of absence, I’ve got an employer that believes in me, a wife that supports and a son who adores me – all of which without would have seen me exiting this challenging year in a very different, possibly dangerous way.

“Once more unto the breach, dear friends, once more”

I finally have another referral to neurology this week (the third or fourth of its kind during this experience), after waiting all year. It feels like a job interview, so consider writing this article as my practice run.

Compared to regular interviews, however, I upsettingly already know the outcome of this opportunity – I will walk away with another pill to try or a test I’ve already had many years before – but what is for certain is I will walk away crushed over more misplaced hope. Hope that I foolishly allowed myself to build up in the void once again.

And I will again.

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Arthritis and Psoriasis Patient Advocate, Writer And Consultant. Owner Of The Pain Company.

I share my story of Juvenile Idiopathic Arthritis to raise awareness and specialise in pain, parenting (with disability) and the mental health impact of living with chronic illness. I write and campaign for leading charities and organisations. In addition, I provide patient experience consultancy for both charities and global healthcare companies.

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