No diagnosis

Having no Cerebral Palsy diagnosis meant I would always have to work out what my physical and emotional issues were. You can’t deal with symptoms, struggle all your life and not know why or what your symptoms are.

Even with a diagnosis I may not have understood what all my neurological symptoms were, sadly for me I’m just working all of those out now. I may have been given a diagnosis without an explanation of my neurological issues.

But having the diagnosis as a child, meant that I would know to seek out the pitfalls, to understand why things were playing out in the way they were, as they happened. I would have understood things like, why I failed to meet my milestones and why I didn’t recognise that they were even milestones, or why I struggled and failed in school.

All my other experiences would have also been understood, ticked off and accounted for, without me having to work things out myself. The circumstances behind these issues can never be changed now. They’ve simply been assigned to the history books.

Sadly, the conversation I tried to have with my father about my physical issues, wanting to know what they were, amounted to very little and I came away with nothing. As with any mental health issues, if issues that we struggle to come to terms with stay unresolved for long enough, they have the capacity to harm.

Having worked some of my childhood out very early on, I made my mind up that these weren’t my issues to carry. I think those thoughts saved me. I do, however get to write about them now even if I can’t resolve the issues themselves. All those responsible will have to reconcile for themselves.

Happy 4th July to all my American friends.


4 Jul, 2017

6 thoughts on “No diagnosis

  1. Thank you Ilana I understand how that feels and can completely relate! I don’t know what you thought, but for me I was wondering for a long while if I was taught the ‘wrong way’ how to walk and if the imbalance problems were all in my head.

    I know now that isn’t true, but to a child and adolescent I simply didn’t know.

    1. Thanks Bonnie. Yes, us both having no diagnosis meant we’d always struggle. With no explanations and no understanding on what we had to deal with. I can understand why you thought you might have been taught to walk the wrong way. It’s completely plausible you would think like that.

      I was aware I had no muscle tone in my leg, knew my left foot looked different to my right, but didn’t understand why I found it hard to grasp anything mentally, particularly in school.

      Looking back and having had to research my symptoms through various Consultations and an MRI scan, I know a lot more than I did.

      It’s just sad that throughout my lifetime, those responsible chose to ignore what I was dealing with. But, with the support, I’m not sure I would have started The CP Diary, so if one good thing has come out of all of this, it is the Diary.

      I feel blessed with being able to write in the way I do, helping myself through some incredibly hard and painful times and helping others also with what they have to deal with.

  2. Yesterday I went in for another EMG and EEG and boy did that hurt! After the muscle biopsy is done at the end of this month, I am hoping and praying for a confirmed diagnosis.

    The Doctor said it’s neuromuscular and I had “myopathic” abnormalities in my muscles, which she saw on the screen during testing yesterday.

    1. Thanks Bonnie. Yes, I hope you get your diagnosis. It sounds as though this new doctor is on to something. Fingers crossed for you.

      A diagnosis doesn’t change where we are with what we deal with, we will always have that thing to deal with, but it does help us understand what we have to deal with and why. I believe that’s important for anyone with a disability and that needs to happen.

      As in both of our cases, not knowing meant life would be incredibly difficult for us. Separate from family issues around a non-diagnosis, for us it’s just important we know.

      Speaking from experience, it helps us find an acceptance on something, rather than on a disability we have no confirmed diagnosis on.

  3. I am sure that finally finding a diagnosis in your 40’s is just a start and this will inevitably require a different thought process, along a different path altogether, as well as having to come to terms in your case with that being with-held from you.

    But you are strong and through your site, you show how to cope with dignity.

    1. Thank you. Yes,the different path you talk about I have already forged out and have been doing for 7 years now.

      I agree that it will require a different thought process from me, but I’m not sure you ever get over the fact that those who should and could have protected you have wittingly chosen not to do so, for whatever reason.

      Having children myself I know how important it is to make sure they adjust into their lives and that is what families and parents must do.

      That sadly, for me didn’t happen. Even without a diagnosis there was sadly little support. The site is my meal ticket to more understanding through my many challenges that I still have to work through.

      I am grateful to have it.

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