How to ‘come out’?

Coping
#1

Hi there,

Having been suffering with this disease for 5 years now - and with many symptoms that affect my day to day life having gotten worse - I’ve found that masking my PFS has become nigh-impossible at this point.

Since my cognitive symptoms have started showing some pretty bad deterioration in doing pretty basic things. I’m constantly exhausted and can’t focus or even follow conversations much of the time. As such, any career plans have been put on hold pretty much. Ultimately I feel I’ve had to be more open about my suffering in the past year or so. However, I find doing this honestly and in a way that people will understand to be pretty impossible.

I feel not being able to take up much work, and not being able to function properly is concerning people like my parents. But I find it impossible to confess to them what’s wrong. There’s too much not known and a lot of baggage and stigma that comes with this disease. And I find its very terminology and name doesn’t do justice to what the condition actually is.

Does anyone have any tips of ideas with how it’s best to go about ‘coming out’ as having this condition? I wish there was a more broad and accepted term for this illness (post androgen disorder,’ or something like that instead). Trying to explain that I took a pill for hair loss that castrated me, and has left me in constant suffering since, is unlikely to garner much sympathy or understanding.

TLDR; does anyone have any advice in explaining having this condition to the people close to them?

#2

I’m impressed that you have people close to you after five years of this crap. I’m coming up on three and I’ve booted everyone to at best acquaintance distance, at worst completely into the void. What do they think is wrong with you?

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#3

I relate. For years I managed to put on the mask and hid it to a good degree. I’d experience occasional outbursts and meltdowns but would manage to re compose myself, some left my life while others stayed. This was without making the connection to fin. As things deteriorated it became more difficult then I finally joined up the dots by stumbling across this site. I told people and the reception was generally lukewarm at best.As things have got worse with disease origression so has the push back. In the end people mostly walk and we get tired of having to front it put an act when it’s difficult to just put one foot in front of the other.

In summary going on my own experiences and observations from sufferers stories is that people migrate the worse you get. Very few are lucky enough to have fully open minded people in their circle. Medical denial and lack of acknowledgement gives people the perfect step off. So you/we either have to try to continue to apeaze others or accept where we are and just push on sometimes as a lone wolf. Trying to convince others of your plight /pfs is a waste of already limited energy.

Hopefully once proven things will change for the better.

We have SKy and the BBC working on pieces on our behalf, these can only help once aired/ in the public arena.

Also continuing to report/ inform the regulatory authorities of every symptom remains very important. Hungary recently banned finasteride. We have to continue to apply pressure to save others and to get our lives back

Best of luck on your journey, my friend

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#4

I have quite a close-knit church community, which - while it’s been a great blessing - I still find myself feeling more and more distanced from, I think mainly due to increasing severity of my cognitive symptoms. There are a select few people who know I’m unwell, one of which is actually aware of PFS and has been a great support recently. The others understand as being something to do with some chronic hormone disorder and which doesn’t have a clear cure.

I wish there was a different term for this condition. I think the term Post-Finasteride Syndrome doesn’t explain any of what the disease actually does, and I think the stigma that’s implicit in it, makes it far more difficult to even be open about

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#5

It’s the perfect recipe for loneliness, this disorder.
You’re looking to heal yourself? - There’s no cure.
You want to go to a doctor for help? - They don’t believe you.
You go to your friends? - They don’t understand, and it’s embarrassing.
I held off telling people for years, one, because they wouldn’t understand anyway, and two, because what would it achieve?

It’s only now that it’s becoming increasingly difficult to mask, with the pain worsening, and my brain giving out, that I find it almost impossible to continue that charade. I left my job last year, in part because I felt I could barely trudge my way through it, and now I’m unable to find a long term job because I can’t function properly. So obviously people (particularly my family) have caught on that something’s amiss. This leads me to think that I have to tell them something, but what?

I do hope the BBC and Sky route goes somewhere. But as I said before, I think even the terminology we use is setting us up for not being taken seriously. Though I am glad some countries are catching on to the negative effects of Finasteride.

I’ve been told for years by doctors that Finasteride can’t have caused me any real harm, yet, this year the British Government website put out a warning about the long lasting effects of fin, so I guess that’s a bit of bittersweet vindication

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#6

Apologies for the ranting, I find it helpful to actually write all this out for once

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#7

And thank you both for your messages!

1 Like
#8

Same here, I told my dad and brother about PFS and others that it was a ‘metabolic condition’. Haven’t talked to my brother in two years now and my elderly dad doesn’t even remember the fin part, he just reminisces about me being healthy which doesn’t do either of us any good.

I guess my answer about ‘coming out’ is that it’s not really necessary IMO. Anyone who asks now I just say ‘fatigued’. It’s really the only symptom anyone outside the community understands.

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#9

I found coming out to be very helpful. In particular friends who have gone through something like a brain injury or traumatic event can relate, because they also feel like they lost a part of themselves and that’s a huge connection to make. When I talk about my condition openly I typically keep it to the anhedonia and brain fog, as those are more relatable and less taboo than the sexual issues. Going to therapy and having someone to talk completely openly about everything has also been helpful. When I came out it was through phone calls with family, and then a one paragraph Instagram post to close friends.

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