When I moved to Manchester 6.5 years ago a list of my official medical diagnosis would have told you nothing about me, as it would have said moderate asthma. My medical records would have shown referrals and appointments with speech therapists, visits to feet specialists as my feet pointed inwards when I walked, it would have shown two referrals to CAMHS with a few appointments, but I had no diagnosis to back anything up, no diagnosis meant I couldn’t put anything down on forms to the RNCM.
6.5 years later and I have several diagnosis to my name (emotionally unstable personality disorder, complex chronic PTSD, anxiety disorders including social phobia and Tourette’s Syndrome, with Tourette’s being the most recent, oh and gender dysphroria/gender identity disorder)
Some of the diagnosis I was told about, others were just hinted at and I didn’t know my official diagnosis until my psych recently wrote me a letter for my DSA application. When getting a new diagnosis I tend to go through a pattern, first I am relieved to know there is a name and a reason for why I am like I am, I can find support with others with the same or similar conditions, but then a few weeks later I go through months of hating the diagnosis and wanting it and every single symptom to just bugger off, I struggled to even say the word Tourette’s for a while when I went through that period, now I am ok with it and if given the option for it to be taken away I wouldn’t say no thank you.
For some people they don’t want a diagnosis, they don’t need a word or label to describe their symptoms, but for me a diagnosis is really important. If I was to sit here and list every single symptom of all of my diagnosis I would be here forever, I would forget symptoms and people would get bored. But having a name for a group of symptoms quickly gives a person an idea of what I struggle with and what symptoms I may have. Obviously people would have to know what something is and I can always explain if they don’t know and even if they have heard of a condition they may still have questions, but for me to say to someone I have x,y,z is much quicker and easier than saying here is everything I struggle with and all my symptoms. I can also feel a sense of belonging with a diagnosis, since my Tourette’s diagnosis I have been to Tourette’s support groups and have made a friend, who lives round the corner from me and we often meet for lunch.
I am trying to get referred again for an Autism Spectrum Disorder (ASD) diagnosis, I want the diagnosis for the reasons stated above. I can’t say to professionals I have an ASD as I don’t officially have a diagnosis, even though a couple of psychs highly suspect it and so does a social worker from the crisis team. So professionals don’t know what I struggle with which is ASD related. It is frustrating, I can see it is so obvious I am autistic, people around me like my partner say it is obvious I am autistic and yet I can not get support for it until I have a diagnosis.
I am going to go to my new GP and ask for another referral and hope that this one gets funded and that I don’t have to go private for answers. I will not give up with this.