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griff11 Community member Posts: 145 Pioneering
Sorry not really sure how to title this or if I'm asking in the right place.

I am the parent of an adult daughter who has chronic & severe OCD.  She lives with her husband who is very supportive of her but she's had an extreme relapse this last month and has had her medication doubled, has not left the house for a month, cannot prep food for herself and only  let me visit her for the first time this weekend providing I didn't touch anything.  She holds down a job but had to take a week sick a month ago as she couldn't get out of bed as she was paralysed with fear.  She's really struggling and as an intelligent person has been once again researching why.  She's been through varies forms of therapy including integrated counselling, CBT, EMT, exposure therapy and even did a week intensive course before lockdown.  Anyway she said reading about other's journeys with OCD a couple have mentioned they also have Autism & ADHD.  She said she has these traits.  She's always had little quirk from babyhood like sorting food out in her mouth and spitting out lumps (she's like me and still has an issue with texture of food), wouldn't have clothes with "string" on the inside - the string you get from having a character on socks, jumpers etc.  Then when about 8 developed a counting thing where if you told her any name - full name she could tell you instantly how many characters - discovered this by chance and no matter how long the name she'd do it!  Seen Derren Brown do it, he said he did it as a child when he was stressed.  They were not a problem as such and until about 15 when she had her fist serious panic attack not an issue.  She was a very high achiever at school obtaining top grades across the board.  She attended a top University but her OCD ruined her uni experience and there were a few points when I thought she would have to quit.

She was saying yesterday she obsessively researches issues if someone mentions something, literally hours on historical or political events.  Stuff she's not overly interested in but will lose all evening and night researching yet she often struggles to maintain attention on things she needs to.  She's impulsive but also extremely cautious.  So last week she cut about 5" off her hair and dyed as it was getting on her nerves but too anxious to go to hairdressers.  She's often blunt when talking to people - can come across as rude and we do tell her.   She cannot bear to hear people eating and if someone talks with food in their mouth she will stop eating as she feels sick.

When stressed she retreats to bed even if it's 5pm and stays there.  She refuses to use toilet in the day, only in morning before shower and before bed at night.

Not really sure what I'm asking but I think it is if there other support we can direct her to as we've always been OCD focussed.


  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,741 Disability Gamechanger
    Hello @griff11 and thank you for sharing with us some of your daughter's story. 

    I'm sorry to hear there's been a recent relapse in her OCD.  I have no personal experience of living with OCD but from what you describe it sounds extremely hard.  You mentioned your daughter has had her medication doubled and has tried various forms of therapy, is she also under the care of a mental health team?  Does she have any support other than her husband and you, and how are you coping as carers?

    Some of the traits you describe could be explained by Autism/Asperger's however as we aren't medically trained this would need discussing with your daughter's GP to explore a possible diagnosis.  Would your daughter be willing to speak with her doctor about this do you think?

    I'm sure your daughter has given the National Autistic Society website a look, but if you haven't maybe give that a browse when you have time as it has lots of interesting resources.  Also, feel free to respond to any of the threads in our Autism and Asperger's category if anything resonates with you.  I'm sure our members would be happy to share their experiences.

    I really hope your daughter's OCD can be brought into remission soon but in the meantime we are here to support you all we can.  Best wishes to you and your family.
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  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,687 Disability Gamechanger
    I've recently started the process for a private Autism diagnosis myself after the GP wasn't much help.  (Cost will be £2.5k if I go through with it so not cheap!)

    Realistically though, I'm only doing it to get some context for other health professionals to understand why I can't do certain things and hopefully get some reasonable adjustments allowed in order to get treatment in other areas.  There isn't any treatment for Autism even if I do get diagnosed, which is why the GP wasn't interested in pursuing it.
  • cupcake88
    cupcake88 Posts: 1,293 Pioneering
    Hi there I’m sorry to hear bout your daughters struggles with ocd . I also suffer with ocd as well as other mental illnesses . I’m on quite a lot of medication and I have a community mental health nurse . Is your daughter under a mental health team ? Or a crisis team they can help so that your daughter can live life more comfortably. I hope she feels better soon as I know how awful living with mental illness is . 
  • griff11
    griff11 Community member Posts: 145 Pioneering
    Thank you all .  She was referred to a psychiatrist when she was 19 but didn't get appointment to see him till she was 21!  Meanwhile we paid privately for a therapist who was helpful and confirmed her OCD diagnosis via some test that my daughter scored over 4 times the benchmark for OCD. The first psychiatrist was the one who put her on meds but just wanted to keep adding to meds including anti psychotic drugs!  Daughter said she'd think about but when she went back to next appointment he'd retired and she saw another psychiatrist who was horrified she'd been offered these !  She saw a CBT therapist for 8 sessions but she didn't help at all as she didn't understand why my daughter couldn't do what she told her .  I thought she actually made her worse.  She's never seen psychiatrist since - 3 years ago .  Meanwhile we've paid for therapists - one quite good but he wouldn't do online during COVID and we can't get her out of house now.  We paid £3000 did specialist residential course - didn't work .  

    We are in a practice of over 10 GP plus trainees .  Before lockdown she went to GPnrgire work as she had another ear infection.  She'd just showered (it's a long process) so had soaking wet hair & it wasn't a good day.  He was quite concerned and rung her later in day to check in.  She has a constant issue with her ears & had episodes of vertigo.  
    When she relapsed a month ago she had to go via mygp.  He responded by email even though she requested a telephone call.  Just a prescription for meds !!!

    She wonders if her inability to full engage with therapy - the psychiatrist said she disassociates when stressed is due to autism or ADHD.  I should add she has a degree in neuroscience so has understanding of brain .  I think when we can get her out of house she needs to see GP as if there is another condition affecting her interaction with therapy for OCD it might help inform how to approach it. Sadly MH services in Wales are very poor . 
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