How to deal with family and friends who believe you have mental health problems?

I think this is another one of the worst things about this condition. My parents, but also my uncles and some of my friends, can’t believe that I could have a crash if I take one of those multivitamins they buy in supermarkets. They think this is absolutely impossible even to refuse Vit D supplements, which almost everyone takes on a daily basis. They don’t believe it’s possible, and with my pasts of depression they think this is a mental health problem, hypochondriac delirium they call it.

I made them read various scientific articles on PSSD and PFS, I work in the medical field, my parents are also health professionals. But they absolutely cannot believe that I can develop damage from a multivitamin.

How do you handle this problem with family and friends, do they manage to understand that you cannot take certain substances that they take regularly without problems?

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Yeah, this a really tough one. I’m very fortunate in that almost everyone I’ve told believed me without much question other than my Dad.

Unfortunately, I have to say it’s made me feel an awful lot of anger towards him - and on a daily basis. To experience such a dystopian event that quite literally decimates every aspect of your life and have someone with no knowledge of the drug responsible and no knowledge of the human endocrine system or other related biological functions question the validity of the problem as though they’re some sort of authority on the issue is quite infuriating. Post 5AR-inhibitor syndromes are a complexity of science that’s beyond most doctors and given many GPs likely couldn’t even explain to you how finasteride works there are very few people on Earth who actually have a licence to form an opinion on the plausibility of this issue; our friends and family members almost certainly don’t have that entitlement.

But to answer your question, I personally haven’t found a way to deal with this issue thus far. Despite repeated attempts to explain my symptoms and how doctors have been unable to help me, my Dad has been extremely obstinate and can’t seem to grasp that a problem that cannot be remedied by modern medicine exists.

Judging by what you’ve said it seems like your family members have reacted in a similar way. The only thing I can say is that other patients I have spoken to who had the same problem have found their family members eventually believed them in time. I know that doesn’t help you right now but eventually they may start to realise that it’s clearly not a facade when you simply don’t just snap out of it in a year or two.

Until then I can only hope you manage to maintain a positive relationship with them. Given you’ve provided them with all the evidence we currently have with no luck there’s not much else that can be done. Fingers crossed though, we really hope that one day in the not too distant future you’ll be able to hand them a paper that unequivocally proves the existence of the disease and a lot of people will owe you a very big apology.

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My experience is a bit more positive, but it took time. Initially, almost my entire family were dismissive of PFS, except for my mum. It created a lot of resentment for me, particularly for my sister-in-law who actively challenged me with some “toughen up” bullshit in the early days of my crash when I was on suicide watch 24/7.

Time has helped a lot. They’ve seen me crash, seen me not improve back to who I once was, and seen the emerging body of medical literature. My video I created earlier this year helped articulate the impact this has had on my life, when I may have otherwise struggled in person.

I would also show your family, if you haven’t already, the literature review from Axo and Awor, which even talks about how interfering with the same pathway can cause permanent worsening in some patients. Unfortunately this isn’t documented anywhere in medical literature, but the 20 year patient record on this forum alone demonstrates that.

I would also show your family the six patient stories on our YouTube channel. This gives them other real humans talking about the condition, who clearly did not have prior health histories. You could also show them the stories of those who are no longer with us - men like Daniel Stewart (a professor of crimonology), John Pfaff (a successful technology executive) and Romain Mathieu (a prospective investment banker studying at a selective business school). These men all took their own lives due to PFS and clearly were accomplished and intelligent men with no prior health problems.

Baylor results could also help in demonstrating this is an extremely complex health problem.

And finally, I think as you’ve already done, continuing to empathise with them is important. We know as patients this is counter-intuitive and extremely difficult to understand, which is why we live with it daily. If it were simple and straight forward, none of us would be in this mess. Communicate that to them, and give them time. Kill them with kindness, so to speak.

Take care,
Mitch

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Most family members and friends only believe I have depression and think that I think I’m having a disease.

Some seem to turn around though once they see I’m nearly two years later and still suffering after having exhausted almost all conventional treatments and therapies. But I also get the occasional “think positive” answer, as if this is somehow my own fault.

Even those who do believe me, would also say to think positive and keep hope, which is of course good advice in itself, but indicative of their inability to grasp the true horror of it. “So you lost all sexual function and see your body deteriorating with very little hope for recovery and no known treatments. Well, just don’t worry too much and be positive.” Ok thanks.

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Thanks, I showed my parents the medical literature of PFS / PSSD, they are two nurses, at the moment they say they don’t find it solid enough. However lately they believe a little more about the syndrome, they actually think that finasteride and SSRIs can have serious adverse events. But they believe that it is enough to avoid these, they cannot believe that a person can be harmed further by Paracetamol, some vitamins or flavonoid supplements, they think that these other products are harmless even if you have this condition.

I’m curious as to why they don’t find the results from Baylor, for example, solid enough? Have they explained why they don’t find the medical literature compelling?

Unfortunately I think sometimes it just takes time for understanding to occur. They may never fully understand that interfering with the same mechanism again can cause worsening, but if they at least accept what has happened to you, that’s a good start.

dig up all the posts in this forum where people crash from Vitamin D and B12 and show them

Can you send the link to that literature

Scroll down to inform your clinician

https://www.pfsnetwork.org/

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Another amazing thing that I live with my friends to whom I try to explain this condition. Although I am a health worker, I have many friends in the field of alternative medicine, and hostile to so-called mainstream medicine. They practically cure themselves, or try to cure themselves only with herbs or herbal remedies, they advise me for my problems to consult a homeopath or a naturopath, not knowing that for me certain herbs can be much more dangerous than some drugs. See some people who have had this condition from Ashwagandha, milk thistle and some others, They avidly consume these products, and fail to understand how they can Hurt me further. Their blind faith in these remedies is not all that different from what some people place in synthetic drugs and mainstream medicine. Besides, they say I should become a vegetarian. :joy: :joy:

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