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Please tell me there’s someone else here with Fowlers Syndrome
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tink13
Community member Posts: 19 Courageous
I just feel alone with it and really am hoping there’s someone else with it on here
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Hello there @tink13 and welcome to the community, thank you for reaching out. To help anyone who does have Fowlers Syndrome share their thoughts, I've marked your post as unanswered, which will hopefully help.
It can be tough when we feel like we're the only one going through something, but the community is here to support you, and you're certainly not alone
Would you like to share anything about living with Fowler's Syndrome that you wish others understood more?
Online Community Coordinator
Scope
Concerned about another member's safety or wellbeing? Flag your concerns with us.
Want to give us feedback? Complete our feedback form now. -
Alex_Scope said:Hello there @tink13 and welcome to the community, thank you for reaching out. To help anyone who does have Fowlers Syndrome share their thoughts, I've marked your post as unanswered, which will hopefully help.
It can be tough when we feel like we're the only one going through something, but the community is here to support you, and you're certainly not alone
Would you like to share anything about living with Fowler's Syndrome that you wish others understood more? -
Thanks so much for explaining @tink13 I must say I'm not too familiar with Fowler's Syndrome myself, and I can understand that not being able to self catheterise must be incredibly frustrating. It's helpful to learn more about the condition.
Please know that you're not alone here on the community, even if there's no one with Fowler's Syndrome on right at the moment. Sometimes having the courage to reach out can help others share what they are going through too.
Can I ask if you're getting any support for your mental health at all? It might be worth considering if you find it's having a big impact on you day to day.
If we can help with that, or anything else, please do askOnline Community Coordinator
Scope
Concerned about another member's safety or wellbeing? Flag your concerns with us.
Want to give us feedback? Complete our feedback form now. -
Alex_Scope said:Thanks so much for explaining @tink13 I must say I'm not too familiar with Fowler's Syndrome myself, and I can understand that not being able to self catheterise must be incredibly frustrating. It's helpful to learn more about the condition.
Please know that you're not alone here on the community, even if there's no one with Fowler's Syndrome on right at the moment. Sometimes having the courage to reach out can help others share what they are going through too.
Can I ask if you're getting any support for your mental health at all? It might be worth considering if you find it's having a big impact on you day to day.
If we can help with that, or anything else, please do askThese things have a massive impact day to day, especially having chronic pain as well. I just feel alone as I’m 23, 24 on Thursday and it seems like there’s nobody like me around anywhere -
Oh a very happy birthday for tomorrow @tink13 I hope you have a lovely day, do you have any celebrations planned?
I'm glad to hear you've got support from the mental health team, and I can certainly appreciate how, as a young adult, our conditions can make us feel a little isolated and separate from non disabled people.
You may already know about this, but the bladder and bowl community are calling for share their stories, and feature a story from a woman living with Fowler's Syndrome and Interstitial Cystitis. It might be worth getting in touch to ask about the community itselfOnline Community Coordinator
Scope
Concerned about another member's safety or wellbeing? Flag your concerns with us.
Want to give us feedback? Complete our feedback form now.
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