Today I am honoured to welcome Aimee to BrizzleLass. Aimee has written a truly moving post on her battle to get the correct diagnosis, one she knows in her heart is correct, but she has really struggled to get the professionals to recognise. As a result she hasn’t received the correct treatment. I am sure there are many people out there who can relate to this story.
Who am I? Woman. Teacher. Musician. Sister. Daughter. The NHS sees to look past all that and fit another definition. Mentally ill.
I have been deemed to have another definition since I was 11. I am now 31.
I have had anorexia, bulimia, bipolar, borderline personality disorder (BPD), depression, and anxiety all thrown at me. BPD being the current one. None are right.
I am no professional, and do not claim to be. I am however an expert on me.
The ‘professionals’ have changed my diagnosis nearly every 18 months, sometimes quicker. They have refused to admit me when I asked for safety. They have said my weight is not critical and should actually lose weight. They had told me I am attention seeking when I needed stitches on my arms. They have refused me a community team because I am functioning. They have discharged me after a suicide attempt despite family being three hours away and begging to not do so until they were there.
I know what I think and feel though I may not understand it or be able to say it out loud.
I am all for a ‘professional’ diagnosing someone. In fact, I encourage anyone unsure if they need help to seek a professional but there is truth in reading up on things yourself.
At my last ‘check up’ with my consultant we were discussing ANOTHER round of medication. She literally used the NHS website to print off the sheets I had already read myself at home. So I began to read about what I think the real definition is. Autism.
- a mental condition, present from early childhood, characterised by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts.
I appreciate that with BPD, that too says I have issues with relationships, black and white thinking, difficulty with emotions. However, I am able to understand things in a way I shouldn’t if I had BPD.
If I were struggling with something someone said, say I don’t understand their reason, my reaction is not because I disagree with what they say but because I don’t understand it. That is Autism. Not BPD.
So my attempt at seeking a professional linked to Autism began. I was referred in January this year and was told I would have an initial appointment in 4-6 weeks. That was nearly 6 months ago.
I have since been told it is more likely to be a year from first being referred to an initial appointment. The demand for adult referrals is high. However, this is an idea that has been talked about since I was young. Since I was a child. Before I was first defined by the NHS.
So I am angry. Upset. Hurt. I feel that I am not worth enough because my turmoil, and two very serious suicide attempts, is not enough for them to see I need help. The right help. I am wasting this therapy time because I am not mentally ill. I am autistic. Someone else who is mentally ill needs this consultant, needs this therapy. I need help in learning how to cope in a world that is not designed for someone like me. I need help in how to live with this Autism, not recover from an illness I don’t have.
In order to prove I am right and that they are wrong I need to keep going to my appointments because if I refuse they will question it, question if I need admitting because I am not looking after myself again, question if I am ‘with it’.
I am the expert on me. I know me. I may not understand it. But listen to me. Give me the tools to help me explain. Don’t take my silence as avoidance or hiding some deep and dark secret. I am just struggling to communicate in the way you want me to. But listen to me. Help me.
You can follow Aimee over on Twitter.