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Don't know what to do...
Former Member
Posts: 1,876,323 The Mix Honorary Guru
Hi all,
I was diagnosed with a very rare skin condition called Hidradenitis Suppurativa about a year ago now, but have been suffering from it for about 7 years. It's a nasty condition, causing you to get outbreaks of spots in various locations of the body and leaves terrible scarring - due to it being such a rare condition very little research into it has been done and therefore there is no cure.
It has got to the stage now where I don't know how much longer I can cope, after doing a lot of research on the internet and reading other sufferers personal accounts it just seems like there is no happy ending, the condition gradually progresses and worsens to the point that many sufferers can no longer work. Due to its possible genetic link many rule out having children, as the guilt of passing this condition onto them would be too much to bear.
The thought of not being able to have children actually leaves me heartbroken, as the months go on I just seem to become more and more depressed to the point now where I'm actually starting to feel suicidal. I have no one to talk to as only my family know and it upsets them if I approach the subject, I am yet to tell my friends, why I don't know I suppose I'm ashamed and am scared of what their reactions might be. So at the moment I feel very alone and my head is proper fucked up, I just want to be happy again
Any help or advice would be much appreciated and sorry its so long!
I was diagnosed with a very rare skin condition called Hidradenitis Suppurativa about a year ago now, but have been suffering from it for about 7 years. It's a nasty condition, causing you to get outbreaks of spots in various locations of the body and leaves terrible scarring - due to it being such a rare condition very little research into it has been done and therefore there is no cure.
It has got to the stage now where I don't know how much longer I can cope, after doing a lot of research on the internet and reading other sufferers personal accounts it just seems like there is no happy ending, the condition gradually progresses and worsens to the point that many sufferers can no longer work. Due to its possible genetic link many rule out having children, as the guilt of passing this condition onto them would be too much to bear.
The thought of not being able to have children actually leaves me heartbroken, as the months go on I just seem to become more and more depressed to the point now where I'm actually starting to feel suicidal. I have no one to talk to as only my family know and it upsets them if I approach the subject, I am yet to tell my friends, why I don't know I suppose I'm ashamed and am scared of what their reactions might be. So at the moment I feel very alone and my head is proper fucked up, I just want to be happy again
Any help or advice would be much appreciated and sorry its so long!
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Comments
i had a bad problem but not like urs
i was abused and stuff and called the samaritans and they helped me discuss the points of the problem
I had a browse on the net for it and it seems quite a nasty thing to have
don't know if you know but theres a website here which says its a support group for people with it. hope it helps.
I have rheumatoid arthritis, started bout 3 years ago. Like you, I found this very difficult to talk about with friends, I think I was almost ashamed of it, but as soon as I got up the courage to talk to a few of my close mates, I felt so much better. I'm not saying it made the pain go away, or stopped me feeling sad, but at least I now know that when I feel really bad I can have a good cry with one of them, and they'll just be there for me, for a hug or a chat or whatever. I also confided in my personal tutor at uni, who was amazingly supportive. I dont know if you're in any type of education, but if so that could be something to think of.
As for the having children part...how old are you? Is there a possibility that more research could be done before you get to the stage of wanting children? There's a lot of advancement in genetic research at the moment, so there's always hope that they'll find a way to help. Just a thought.
I don't really know what else to say, apart from, hugs xxx Please talk to someone hun, and take care of yourself.
Tates xxx
Talking to friends is probably one of the biggest ways you can help yourself right now. Of course you feel awkward about it, and I expect that in a way, you are holding it back because admitting it to them means admitting it to yourself? This is a massive hurdle to overcome, but if you can do it it will ease your mind and allow you to confide in people - and get a bit of support when you're feeling low, which is what you really need right now.
I know I'm forever flinging helpline numbers at people, but it could really help you to talk to someone who is outside of your immediate situation - you'll find they won't judge - abnd if you really can't tell your friends yet, it will help you get a weight off your mind.
If you decide you'd like to do this, the following people should be useful:
Careline
Telephone counselling service for children, young people and adults on any issue, including relationships, depression, mental health, child abuse, bullying, rape and sexual assault, domestic violence, addictions, stress etc.
Telephone: 020 8875 0500
www.careline.org.uk
Also, I don't know if you're a student or not but this organisation are excellent if you are:
http://www.skill.org.uk/
Take care
Hannah Spanner x