Thread by @C_Flurey

“I turned in my man card”
November is men’s health awareness month so what better time to share the key findings from my recent paper. Available here open access: academic.oup.com/rheumatology/a…

Men with #scleroderma / #systemicsclerosis (SSc) have lower survival rates than women (~2:1) but no studies had previously explored men’s experiences and support needs. So I conducted focus groups with men with SSc in UK and USA

Many of the participants discussed their mortality often using dark humour to make it easier to talk about (“I’ve stopped buying green bananas”) They worried about how their families would cope and made plans for a future they didn’t expect to be part of (often financially).

Roles of father/grandfather were important. Participants often pushed their physical limits to engage in active play. They grieved for the things they had expected to live long enough to do with their children/grandchildren.

Many had no choice but to stop working, and the loss of the breadwinner role had a big impact on self-worth and mental well-being: “I don’t have a job anymore. […] I’m not trying to feel sorry for myself it’s just I ask myself, what am I here for?”

Men reported erectile dysfunction as a key symptom (“if there’s one thing I could fix”) not generally addressed by their clinicians, and not raised at diagnosis: “I had to figure it out through my own self study”. They would prefer healthcare professionals to ask about this

They worried about the impact ED & other SSc-related barriers to sex had on their partners. They talked about this openly in the focus groups and gave each other tips on how to have awkward conversations with their partners

The focus groups were raw, emotional and supportive. There were tears - MEN DO CRY.
Many participants said they would open up about emotional impact only to their wives or adult daughters and their Dr but many would still mask the full impact

“There are times where I feel sick and I want to tell people I’m sick but, I don’t share it with my wife or my mom. I mean I’m the breadwinner, so I’ve got to try and stay positive and focussed as long as I can”

Due to the severity of their condition many participants had no choice but to accept practical help:
“Do you know how it feels to have your wife to put your socks your shoes, help you put your underwears on, got to help you to get in the bathtub, that hurts, that really do hurt”

Support should be structured & have a purpose. Mixed views on whether in-person or virtual - but distance was a barrier to in-person support. Partners should be included (“where we carefully educate them”). Some men-only sessions preferred to enable ED to be discussed freely

Thanks to all the men who took part, @Worldsclerofnd for funding this work, and all my collaborators - I think only @PaulGaldas is on Twitter!