A very special day in the undiagnosed community

It’s Undiagnosed Children’s Day! The day we celebrate the children born every day with conditions so rare that they cannot be diagnosed. 

This will not be an eloquent post, I get too emotional thinking about it but I will try.

Being the parent of a child with any sort of disability is incredible difficult. Terrifying in fact. We all face making potentially life changing decisions every day.

Being the parent of a child with an undiagnosed disability is a whole new kind of heartache. Accessing the support and services available is incredibly hard without a diagnosis. Persuading those around you that you aren’t neurotic. Trying to get a physio referral before the age of two is almost impossible without a diagnosis. Persuading the very busy consultants to look at your child without a diagnosis is HARD. Applying for things like DLA, carers allowance, blue badges etc is an absolute mine-field without a diagnosis. The doors are all closed and you have to be mentally very strong to kick them down and shout loud enough for them to give your child what they need.

Appointments are frustrating. You wait six months for them, to then sit then and watch their doctor’s eyes light up at this exciting mystery child at first and then months later, tell you they’re stumped and there’s not much more that they can do. You have to put your child through endless blood tests, EEGs, MRIs, assessments, X-rays, studies … The lot. Slowly realising there is little hope of a diagnosis.

I have cried rivers of tears for my SWAN Tilly. I’ve cried over the silliest things, from not arguing over curfews when she’s a teenager to not going to baby ballet. I never thought I would pray for her to have well known genetic conditions simply to give her a label so she can have all the support she needs. I never imagined I’d simply pray it wasn’t something that would kill her or limit her life.

I hate answering “so what’s wrong with her” because “they don’t know” doesn’t really cut it.

That’s the biggest fear when your child is undiagnosed. The Unknown. Not knowing if your child will outlive you because of it is hard. Not knowing and then eventually accepting they won’t be able to have children is hard. Not even knowing if you or your brother can have more children because it could be genetic. I have made peace with not having more children of my own but I pray often for answers for my brother’s sake. I don’t wish this life onto him and his future partner.

It’s bloody lonely having a child with an undiagnosed disability. There’s no week long awareness celebration, there’s no “oh my cousin has that.” It’s very lonely.

However, there is SWAN UK. The most incredible support group that brings all of the undiagnosed community together in all their wonderful variations and gives us a place to call home in the midst of the storm. We all know the joys of begging health care professionals for help. We all know the sadness of being told countless times that they haven’t found anything. We all know the nauseating look of excitement of a new professional’s face when they hear what an enigma your child is.

We are all different, no two SWANs are the same but having that solidarity and understanding, means more than I could ever say.

I will never be able to put it words what life is really like with an undiagnosed child. It’s indescribable.

Help SWAN UK on this special day

You can donate to SWAN UK by texting SWAN11 £(your amount) to 70070

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