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Does having undiagnosed conditions affect you?

RachelO

Hi everyone, I have been thinking do any of you have conditions which are undiagnosed that makes it more difficult for you in anyway. I know some of you are still waiting to be diagnosed for a neurodivergence and the wait for that can be very difficult. To wait for a diagnosis can make some people not able to properly move on with their lives. I needed to put mine to the side when I was waiting so I could free up my mind and move on with my life.

I have been reading and some of you seem to have undiagnosed conditions which you struggle to be diagnosed for. I am thinking for things like allergies or dyslexia. Me, I have been diagnosed with an allergy by bloods and it was helpful for me to have this as my near constant y allergy year round stumped me and it turned out to be a dust mite allergy which my notes say I had since a child. My father took me to a consultant as a 2 year old about this. It seemed to go missing and I didn’t get properly diagnosed to adulthood for it. The allergy can give me what looks like tics at times I think with irritation on the body and tapping it and word expression at times-and the sensory is on top as well. The treatment that I get for having an allergy diagnosed is an anti histamine. I get peace of mind by knowing officially. I thought I might be allergic to other things but I wasn’t officially in the test. I am noted as having a lactose intolerance in my notes as well though, but that is not an allergy.

I also thinking I could have a learning difficulty perhaps dyslexia because I have a tendency to leave out words I thought I have written and can miss some even when I have read what I have written back. I type in word sometimes and that helps.  I have struggled with grammar since a child. Also, I may have something called hyperlexia. I was meant to be screened for dyslexia but I haven’t heard anything from them for a while.

I am also diagnosed with Reynaud syndrome and finding out was helpful because I get bad circulation problems especially when it is cold.

I just discovered about joint hypermobility and it is possible I could have this-I tend to sprain and dislocate it seems my hip quite a bit, sleeping position probably doesn’t help. This could be though also due to osteoporosis tested by a DEXA scan and a history of anorexia has may been not helped. I could do the splits till my 30s and a bit out of practice now and always had bendy thumbs and can do at least probably four things on the test which is needed for my age.

I was wondering  if not being diagnosed for some things may be affecting your wellbeing in anyway and if so is there anything you can do to get diagnosed that we could help with? At times people can seem a bit stressed and I was wondering if unknown conditions may be adding to it.

Parents

  • I am in my early 50's & awaiting an autism assessment via nhs right to choose. I am really struggling with binge-eating. I am vegetarian, but only like a handful of healthy foods (but I could still probably be healthy if i just ate them). However, I always go for crisps, chocolate, sandwiches, cakes etc instead. Even when they are the same price (etc) as fruit etc. Plus, "if it is in front of me, i eat it". Eg I can't just eat 1 or 2 biscuits: i eat 5 or 6. So I will eat when i am not hungry, or have just eaten, etc. I do not do this due to "boredom, comfort eating, feeling alone or being down". I hsve a lot of childhood trauma events that I need counselling  (not just talking therapies) about, but my eating ptoblems only started approx 3 years ago. I self-referred to my local eating disorder team & intitially they said "you haven't got an eating disorder, you have got disordered eating" & put the phone down with no explanation or help. I made another referral last year, as it was even less controlled than before & they just dismissed it out of hand + didn't even look at it. I'm finally on the list for counselling for it (maybe start of 2027?). But am worried this will clash with my autism aasessment, as i can only do 1 set of therapy at a time & i need to ultimately do all of them. I also have undiagnosed Cassandra Complex.

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  • I am in my early 50's & awaiting an autism assessment via nhs right to choose. I am really struggling with binge-eating. I am vegetarian, but only like a handful of healthy foods (but I could still probably be healthy if i just ate them). However, I always go for crisps, chocolate, sandwiches, cakes etc instead. Even when they are the same price (etc) as fruit etc. Plus, "if it is in front of me, i eat it". Eg I can't just eat 1 or 2 biscuits: i eat 5 or 6. So I will eat when i am not hungry, or have just eaten, etc. I do not do this due to "boredom, comfort eating, feeling alone or being down". I hsve a lot of childhood trauma events that I need counselling  (not just talking therapies) about, but my eating ptoblems only started approx 3 years ago. I self-referred to my local eating disorder team & intitially they said "you haven't got an eating disorder, you have got disordered eating" & put the phone down with no explanation or help. I made another referral last year, as it was even less controlled than before & they just dismissed it out of hand + didn't even look at it. I'm finally on the list for counselling for it (maybe start of 2027?). But am worried this will clash with my autism aasessment, as i can only do 1 set of therapy at a time & i need to ultimately do all of them. I also have undiagnosed Cassandra Complex.

Children
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