Lived Experience Forum

[Adge]

@NatureLoversaid: "I am sorry to read about your childhood trauma, Anu. I also have that."

Yes - I have Complex PTSD, from continued childhood trauma - spanning about 20 years.

Adge

[NatureLover]

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@ARCVic wrote:

But what helped me was to be extra vigilant to adopt my strategies on the "good' days. On the tough days it was purely self-care. 

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Thank you for explaining this, Anu @ARCVic 

It sounds as if you've done a lot of hard work and that it's paid off. That's encouraging 🙂

[ARCVic]

Question 4: How do you talk to a family member or friend about OCD and ‘Living double lives’? 

I found that for majority of my illness, I was living double lives. I know that I certainly became an expert in hiding my compulsions, obsessions and my internal turmoil. I found it extremely difficult to voice my thoughts and feelings due to the fear  of being embarrassed, shamed and marginalised.

Once my parents became aware, what really helped me was when they would just sit next to me and validate how hard it was for me.

What didn’t help was when they (out of love and care) would just tell me to stop at 3am. Because deep down I wanted to stop too – I just didn’t know how.

Additionally when they became aware of what I was and had been going through – they were more worried about me than I was about myself. Because to a certain degree that was what I knew most my life – I had processed it for myself.

So their initial worried outlook was them still processing what their child had been going through – it was in a way a shock for them. More so for them that for me.

And what helped them in supporting me was when they first sought therapy for themselves. When they processed it – they were comfortable with my diagnoses – they were able to be there emotionally for me. They didn’t feed their anxiety on to me.

[ARCVic]

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@Shaz51 wrote:

hello @TiSoG21 

my husband was diagnosed years ago 

love to hear more 

@ARCVic, is OCD more than just having a routine that you follow all the time ?

@Daisydreamer, @Former-Member , @NatureLover , @Former-Member 

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@Shaz51 For me OCD was definitely more than just a routine - there were also intrusive thoughts which were very anxiety provoking. @NatureLover their response to this question also covered some aspects that relate to me. OCD is very individualistic - popular media has in a way minimised the impact of "real" OCD and their outlook of it can be very dismissive.

[NatureLover]

@Adge  I'm very sorry to hear you had childhood trauma also 😞

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@Daisydreamer wrote:

For community members, does the phrase "Behind the mask of OCD" connect with your story?

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I find that although I'm pretty open about my mental illnesses, I have to have a mask to some extent with the germophobia, as it's offensive to others, sadly. I have lost 2 friends over it in the past. All my friends and family know I have germophobia, but I try to not go  into details, and just carry sanitiser everywhere and use it while chatting or whatever. I can't have people over to my house though. Also, if I am ever not coping with germ triggers while out, I have to leave and come home straight away. In that case, I might hide it behind some other excuse. I would much rather be open, but I can't risk losing any more friends. 

[Daisydreamer]

Another quesiton for your @ARCVic, this one is about the experience of diagnosis

Question 5: Did a diagnosis help and facilitate your journey? 

Every person's experience with diagnoses is different, and we would be interested to hear from your journey what this was like

[ARCVic]

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@Clawde wrote:

Hi can you tell us more about the self care please

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@Clawde Self-care again is very individualistic. For me it consists of (in no particular order and depending on mood):

• Baking/cooking
• photography
• Singing (Opera/pop/musical theatre)
• walking
• Hot Shower
• gardening

[Former-Member]

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@NatureLover wrote:

Be interested also to see others' views...

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I find with my OCD; it is not just the routines. The preparation and supplies I require for it are the hoardings of cleaning and higene products. When you go through my cupboards, I keep contributing to dozens of products even though I have enough to last a few years. 

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[TiSoG21]

My situation is a unique one, as my partner believes he can manage it without treatment of any kind - medication or otherwise. 

This means we manage the symptoms more than the condition itself, a lot of excessive cleaning (as he has contamination OCD).

Suggestions:

- be exceedingly patient - no matter how much we understand, we still don't understand.

- make sure you have your own support in place (this is absolutely essential or you will burn out and risk resenting the person you're caring for)

- put boundaries in place early so they dont end up with higher expectations of you than you can ever hope to maintain. 

I will send more through if I think of them!

[ARCVic]

Question 5: Did a diagnosis help and facilitate your journey? 

For me a diagnosis was a relief because it gave me something to work off of, it normalised it and gave me hope. But I appreciate for other’s a diagnosis is not that helpful. For me it allowed me to accept me as who I am and come to terms with it. For others a diagnosis means that they don’t want it anymore and work hard in trying not to have it.

But I realised fighting it or not wanting a diagnosis made my anxiety worse. And when I accepted it for the way it was thing fell into place.

Acceptance though is very loaded and it took a LOT of hard work and self reflection.