‘Where you are right now, you don’t want a diagnosis. Because then you will be condemned to it.’
I remember those words clearly. Said by a well meaning doctor, two years ago. I remember his slightly greying moustache and gentle tone of voice. I remember that it was dark outside and he was on the day shift. I remember the little tempa dot thermometer that I had picked up from the bedside. I remember spinning it around and around between my fingers, as if the speed of the motion could undo the reality of his words. I remember that kind, well meaning doctor very well indeed.
I remember that I didn’t agree with him.
And I still don’t.
Please don’t misinterpret me. We are lucky. Very, very lucky. Some of the conditions that my little boy has been tested for have been beyond heartbreaking. I have read potential symptom lists and gasped at words that should never, ever appear next to each other (‘paediatric’ and ‘dementia’ being two prime examples). Thankfully he tested negative, again and again. Those options were ruled out. Being undiagnosed in this sense is, and remains a blessing. But…..do we ‘not want’ a diagnosis? In our case, no. Knowing the truth won’t change the truth. We need a diagnosis. We need a prognosis. To not have one puts us on an uncontrollable fairground ride that shoots to new highs and then drops out of nowhere, in a matter of moments to frightening lows.
If you have read some of the posts in this blog you will see that consistency isn’t a key feature. In fact viewing some of my posts back to back reads like two halves of my psyche having a bit of a domestic ‘Its not progressive, whoop, he’s doing really well.’… ‘No, wait, he’s regressing again. Things are looking bleak.’… ‘Oh, hang on, he’s moving forward again, bigger whoop.’ You see. To be honest. It really depends on the week. The day. Sometimes even the hour. Even our doctors disagree. I come out of some appointments full of positivity, convinced that things will improve and the world will all make sense again. I come out of others crushed. Emotionally beaten. Mentally slapped by statistics. Broken by words like ‘hospice.’
Why am I talking about this now? Why is the woman who hides behind false names and photos of toys suddenly being so upfront?
Because tomorrow is Undiganosed Children’s Day. Because when this day comes around it reminds me that so few people realise that undiagnosed children even exist. Because so often, without a diagnosis, we fall straight through the cracks of a system that is focused on ‘care pathways’ and ‘outcomes’. Because we are not a tiny minority, but thousands upon thousands of families desperate for support. Because we need to be heard in order to demonstrate our reality and bring about change.
|An actual image? The toys are gonna be maaad.|
Because being honest matters. It really matters.
I learned that last year. The post that I wrote then has sat at the top of my ‘popular post’ reel ever since. It was the first time I was truly open and upfront. The post that I paused before sharing. The one that made me catch my breath and hover over the ‘publish’ button. So it’s time to get honest again. To try and explain why it matters. Why is it such a big deal to be ‘undiagnosed?’
Well, actually..sometimes it isn’t. But, as we have found in the last few months, often ‘undiagnosed’ is a cruel path to tread. You see, right now, our fairground ride isn’t going so well. We’re sat tentatively at the edge of a drop hoping that, against all expectations, someone flicks the controls and drags us backwards to safety.
Little J is currently testing our medical professionals. From an acute perspective, he is actually very stable. There has been no big ‘crisis’. No single terrifying moment. Nothing that could be fixed by a responding medical team. No, it’s more of a slow, frustrating change. The kind that local hospitals can do nothing about. His neurological symptoms are increasing and he is developmentally regressing. Is it just a case of finding the right medication to stop the symptoms? Possibly. Is this our new normal? Maybe. Are things going to get worse? Depends on who you ask to be honest. The optimistic doctor, the pessimistic doctor. We’ve heard them all. Then the indifferent doctor who, ‘really wouldn’t like to prognosticate.’ (me either – sounds painful).
And us? Well, we wait. This is mostly our undiagnosed life. Not the big scary drops or the amazing highs when things improve. It is the in between times. At home, waiting. Thinking. And waiting. And thinking. And hoping. And waiting some more.
And we have done this for over two years.
With no diagnosis there is no planning. No concept of the future. Just uncertainty.
I have heard it said many times that there is a need to grieve when you realise that your child has profound disabilities. You have to grieve for the child you thought you would have and the life that you expected for them. I understand this. I adore my boy. I accept him for all that he is. But I have had to let go of a vision of his future. It’s not that simple though, the goalposts keep moving. As time goes on I have to let go of another vision of his future. Then another. Then another. Then another.
Denial – Anger – Bargaining – Depression – Acceptance. The widely accepted process of grieving.
I have certainly found myself following this process at times. Epic levels of early denial as I refused disability equipment from our previous fantastic local authority (MAJOR error – it took almost a year to be assessed in our new borough). Anger as I ranted to anyone who would listen about failings in the healthcare system (That was a fun stage wasn’t it?). Bargaining as I pleaded with the unknown. Begged to take his place. Then the hard times when we're emotionally tested. And acceptance…well, I’ve almost got there. So many times. But then things have changed. Our eventual positivity and sunny outlook on ever changing levels of disability have been smashed on numerous occasions by fears of a life limiting condition. How can you even begin to reach an acceptance of the future, when you have absolutely no idea what you are accepting?
I could reel off clichés about ‘living for the moment’, but you see, without a diagnosis, it just isn’t that simple. There is a constant guilt and a fear of regrets. I don’t know if we should be working harder than ever before, desperately trying to get the money we need to move our disabled child, who will become a disabled adult, to an appropriate adapted house. Or should we be spending every precious second with our boy, spending whatever money we have taking him to fun, beautiful places? Should I be pushing him through the daily therapy that he hates because it will improve his long term developmental outcomes? Or should I just be giving him the most fun a child can ever have – filled with nothing but cuddles and the things he loves. Not tears, uncomfortable physio shoes and standing frames.
I am trying to find a cautious balance. But without answers, there will always be a fear of getting it wrong.
Then there is the worry. The insanity of the worry – coming from each side of that ever arguing psyche. The part that leaves me lying awake at night wondering what will happen when we are too old to care for him. The part that knows that without a diagnosis, he is unlikely to have any siblings keeping an eye on him. The part that pictures him under the care of the state and wants to scream. Then, within minutes comes the crushing, devastating fear of loss. This is the reality of being undiagnosed.
I know that many families may not feel this way – perhaps better not to know. But for me personally, I need to know. I need to plan in order to make sure that we do things right. To make sure that we put the right things in place. To ensure that we do everything the best that we possibly can.
Because he deserves the best.
And do you know what helps him to get the best? This.
The fact that I can openly talk about life without a diagnosis. Order those thoughts. Connect with others. Without the support and ongoing encouragement of other undiagnosed families there is absolutely no way I would be brave enough to blog (I still feel a little close to vomiting each time I press publish). Without their advice and support, I may have become consumed with fear and sadness. But I’m not.
Depsite all of the things I have just said. I’m really, really not.
Because I am able to see the endless beauty in what we have. Because, through the advice and support of others I am less scared and more able to just be. Because I know we are lucky. Whatever road we end up walking, we were blessed with a happy, beautiful wonderful boy. We are lucky every single day.
And because I see so many others in similar situations and I know that they, like us, are not consumed by sadness, but are able to celebrate all that their chid is. And be happy.
On days like tomorrow, we are able to stand together and ask the world to see us. Because we need to be seen. And understood. We need to keep being open, keep being honest and hope that we can bring about change and practical intervention for families who need it. The intervention that needs to be there and should be there.
Because every time we speak openly we raise awareness. We let people know that 50% of children who go through NHS testing emerge with no diagnosis. When we speak up we let other families know that we are here.
Because right now someone may be reading this and saying the words that I said when we first found SWAN UK (Syndromes Without a Name). The words that I know some of the people I am now privileged to call friends once said.
‘We thought we were the only ones’.
You can watch the fabulous children of SWAN UK in the Undiagnosed Children’s Day 2014 video here.