污名的完美風暴：男同性戀者的MPOX經歷
克里申·塞繆爾 / 2023 年 7 月 27 日 / aidsmap
安東尼·史密斯博士在 IAS 2023 上。攝影：Roger Pebody。
定性研究發現，大多數被診斷患有MPOX（以前稱為猴痘）的澳大利亞男同性戀者由於嚴重的症狀、長時間的隔離期和對醫療服務提供者的侮辱而經歷過非常痛苦的經歷。 新南威爾士大學健康社會研究中心的安東尼·史密斯博士本週在第十二屆國際愛滋病協會愛滋病毒科學會議（IAS 2023）上介紹了這一結果。
急性疾病發生後，還產生了長期的身體和社會影響。 雖然MPOX病例可能有所減少，但這項研究顯示，受該疾病影響的人可能需要持續的支持和創傷知情照護。
背景
2022 年全球 MPOX 疫情主要影響男同性戀和雙性戀男性。 在報告的 87,942 例病例中，有 42 人死亡。 2022 年爆發期間，澳大利亞出現了 145 例 MPOX 病例，主要是從歐洲旅行返回的人，沒有死亡報告。
安東尼·史密斯博士與 NAM aidsmap的 Krishen Samuel 談論了 MPOX 的影響。
媒體報導將此次疫情的爆發與愛滋病毒的早期階段進行了比較，當時男同性戀者的性行為也與一種被污名化的疾病有關。 然而，很少有定性研究調查男同性戀和雙性戀男性中MPOX的生活經歷。
研究
2022 年末，Smith 及其同事採訪了 13 名在 2022 年 7 月或 8 月被診斷出患有 MPOX 的人。其中 11 名參與者可能是在澳大利亞境外感染了 MPOX。 七人在澳大利亞接受診斷和照護。 大約六個月後，對十一名參與者進行了後續採訪。 所有參與者都是白人同性戀或雙性戀男性； 其中一人感染了愛滋病毒，其病毒載量無法檢測到。
症狀經歷
參與者對症狀嚴重程度的描述各不相同，有些人因自己只有輕微症狀而鬆了口氣：「我感到非常幸運，因為我只起過兩個水泡，而且沒有其他任何後果。 它們變得相對較大，[……]但我的情況很溫和，我感到很幸運」。
對於其他人來說，所描述的痛苦是極端的：「這將是我一生中經歷過的最嚴重的痛苦。 這是極其難以管理的。 我淚流滿面。 我在流血。 坦白說，無論是感覺還是看起來，我的直腸都在腐爛或潰爛」。
三名參與者需要住院治療，另一名參與者則因擔心受到恥辱而選擇不去醫院。 許多參與者對面部、手臂和生殖器等部位病變和疤痕的可見度表示擔憂。
醫療保健體驗
一些參與者報告了與非評判性和同理心的醫療保健提供者的積極醫療體驗，其中包括積極挑戰道德指責觀念的臨床醫生。
「這位女士從[公共衛生]部門打來電話，她只是說：『你好嗎』？ 我開始哭……她說：『看，這不是你的行為。 這是一種疾病。 可以是任何人』，這讓我感覺好多了」。
「老實說，他是唯一一個表現得像真正醫生的人。 他提出問題。 他戴著手套，所以他不怕碰我。 而其他人似乎連呼吸距離都不想靠近」。
然而，大多數男性報告稱，疼痛管理不足，對其性行為和創傷經歷的感知判斷不足。 一位參與者談到了接觸者追踪的經歷：「他們在記錄信息方面非常糟糕，有時我會說他們侵犯了隱私。[……]他們的態度是『我不相信你告訴我的』。我感到被誹謗、受害，感覺自己很骯髒，好像我不誠實」。
一些參與者分享了與直腸檢查和疼痛管理相關的痛苦經歷。 這些經歷的污名性質堪與愛滋病危機初期相比。
「他想對我做直腸檢查……我真的很不願意，因為我真的不同意，但他說服我一切都會好起來的。 不太好……我哭了。 我的視力變得像隧道視野一樣。 我非常痛苦。 我真的很不高興。 這似乎完全沒有必要」。
「他們把我安排在一間側屋裡。 他們給我插了導尿管，卻沒有緩解疼痛，這太可怕了。 […]我被留在側室至少6個小時，我痛苦地尖叫。 老實說，我寧願死了。 這幾乎就像是八十年代的愛滋病患者。 我感覺自己受到了很大的歧視」。
MPOX後遺症
七名男子報告了與 MPOX 有關的長期問題。 這包括慢性疲勞或直腸炎（直腸和肛門內壁炎症）等持續性疾病、對疤痕的擔憂以及因劇烈疼痛或恥辱性臨床照護而造成的心理困擾。
「它仍然給我帶來社交焦慮、噩夢、閃回等麻煩。 每次一到醫院附近，我的心率就會加快，幾乎要驚恐發作。 這一切就像所有我所不喜歡的任一小事」。
一些男性描述了自MPOX以來他們的性行為發生的變化，包括避免性行為。「根本不想讓他們碰我。 完全不喜歡。 我認為這有點擾亂了我的魔力」。
在某些情況下，這擴展到更廣泛的社交互動：「我覺得我生命中的一部分被切掉了……當我從海外回來時，我體重減輕了很多，現在一切又恢復了……我一直在把那些我通常會交往的人推開，我可能因此變得更像一個隱士」。
兩名男子需要進行肛門矯正手術。 該參與者在相隔六個月的兩次採訪中都表達了挑戰：「我上周剛剛接受了肛周膿腫手術，他們認為這是由猴痘疤痕組織引起的。 我們正在等待真正可怕的直腸炎的結果……所以，痛苦、折磨和心態並沒有改變。 這是我仍然需要處理的事情」。
「已經快一年了，胃腸功能都沒有正常。 在過去的 10 天裡，我實際上沒有疼痛，沒有恐懼，並且可以控制我的腸道。 這是一條很漫長的路」。
此外，所有參與者都對再次感染MPOX以及未來是否有必要接種疫苗表示擔憂。
結論
「從這些敘述中可以學到明顯的含義」，史密斯總結道。 考慮到可能出現與健康相關的困擾，醫療保健提供者應採取創傷知情照護方法，圍繞疤痕和其他持續的MPOX併發症提供支持，並就任何相對的感染後免疫力以及患有MPOX的人是否應該接種疫苗提供更明確的建議 。
考慮到這些報導的嚴重性以及媒體報導的類似經歷，他問道：「我們如何確保未來對新興和再浮現疾病暴發的應對措施不會受到污名化」？
參考文獻：
Smith, A K J et al. 「這是我一生中最可怕的經歷」，了解MPOX疾病期間和之後的社會和照護經歷。 第 12 屆 IAS HIV 科學會議，布里斯班，摘要 OALBD0602，2023 年。
A perfect storm for stigma: gay men’s experiences of mpox
Krishen Samuel / 27 July 2023 / aidsmap
Dr Anthony Smith at IAS 2023. Photo by Roger Pebody.
Qualitative research found that most Australian gay men diagnosed with mpox (previously known as monkeypox) had highly distressing experiences due to severe symptoms, long isolation periods and stigmatising healthcare providers. Dr Anthony Smith from the Centre for Social Research in Health at the University of New South Wales presented the results at the 12th International AIDS Society Conference on HIV Science (IAS 2023) this week.
Following the acute illness, there were also longer-term physical and social effects. While cases of mpox may have declined, this research suggests that people affected by the illness may require ongoing support and trauma-informed care.
Background
The 2022 global mpox outbreak mainly impacted gay and bisexual men. Among a reported 87,942 cases, there were 42 deaths. Australia had 145 mpox cases during the 2022 outbreak, mainly among people returning from travel to Europe and no reported deaths.
Dr Anthony Smith talks to NAM aidsmap’s Krishen Samuel about the impact of mpox.
Media reports compared the outbreak to the early days of HIV, when gay men’s sexual behaviour was also linked to a stigmatised disease. However, there has been very little qualitative research investigating the lived experience of mpox among gay and bisexual men.
The study
In late 2022, Smith and colleagues interviewed 13 people who had been diagnosed with mpox in either July or August of 2022. Eleven participants had likely acquired mpox outside Australia. Seven received their diagnosis and care in Australia. Follow-up interviews were carried out with eleven participants around six months later. All participants were White gay or bisexual men; one was living with HIV with an undetectable viral load.
Experiences of symptoms
Participants’ descriptions of the severity of their symptoms varied, with some expressing relief that they only had mild symptoms:
“I feel super lucky that I only ever had two blisters and there was nothing else that came of it. They got relatively big, […] but I had it so mild, I feel so fortunate.”
For others, the pain described was extreme:
“It would be the worst pain I have ever experienced in my life. It was extremely unmanageable. I was in tears. I was bleeding. Quite frankly, it felt and looked like my rectum was rotting or ulcerating away.”
Three participants required hospitalisation, while another chose not to go to the hospital due to fear of stigma. Many participants expressed concerns about the visibility of the lesions and scarring on areas such as the face, arms and genitalia.
Healthcare experiences
A few participants reported positive healthcare experiences with non-judgemental and empathic healthcare providers – including clinicians who actively challenged moralistic notions of blame.
“This lady called from [Public Health] and she just said, “How are you?” and I started to cry… She said, “Look, this is not your behaviour. It’s a disease. It could be anyone,” and made me feel a lot better.”
“He honestly was the only one that acted like an actual doctor. He asked questions. He had gloves on, so he wasn’t afraid to touch me. The other ones seemed like they didn’t even want to get within breathing distance.”
However, most of the men reported inadequate pain management, perceived judgement regarding their sexual behaviour and traumatic experiences. One participant had this to say about experiences with contact tracers:
“They were very poor at recording information, and at times I would say they broke privacy. […] They had this overarching ‘I don’t believe what you’ve told me.’ I felt vilified, victimised, felt like I was dirty, like I was not honest.”
Some participants shared harrowing experiences related to rectal examinations and pain management. The stigmatising nature of these experiences were compared to the early days of the AIDS crisis.
“He wanted to do a rectal exam on me… I was really reluctant because I really hadn’t consented, but he convinced me it was going to be fine. It was not fine… I cried. My vision went to like tunnel vision. I was in so much pain. I was really unhappy. It seemed completely unnecessary.”
“They put me in a side room. They catheterised me with no pain relief, which was horrific. […] I got left in the side room for at least 6 hours, I was screaming in pain. I honestly would’ve rather died. It was almost like being an AIDS patient back in the ’80’s. I felt so discriminated against.”
Mpox aftereffects
Seven men reported longer-term issues related to mpox. This included ongoing illness such as chronic fatigue or proctitis (inflammation of the lining of the rectum and the anus), concerns about scarring and psychological distress because of severe pain or stigmatising clinical care.
“It’s still giving me trouble in terms of like social anxiety, nightmares, flashbacks. Every time I’m near the hospital, my heart rate goes up and I almost have a panic attack. It’s like little things that I didn’t expect all of this.”
Some men described changes to their sexual practices since mpox, including avoidance of sex.
“I didn’t want them to touch me at all. Like at all. I think it has messed up my mojo a little bit.”
In some cases, this extended to broader social interactions:
“I feel like there’s a portion of my life just cut away… I’d lost all this weight when I came back from overseas, and now it all has gone back on… I’ve been pushing people away that I would normally catch up with, I’ve probably become more of a hermit from it.”
Two men required corrective anal surgery. This participant expressed challenges in both of his interviews, six months apart:
“I’ve just had surgery last week for a perianal abscess which they believe has come from the monkeypox scar tissue. We’re waiting on results for really terrible proctitis…So, the pain and torture and the mindset has not changed. It’s something I’m still having to deal with.”
“It’s been nearly a whole year of not having normal gastrointestinal function. The last 10 days I’ve actually had no pain, no fear, and had control of my bowels. It’s been a very long road.”
Additionally, all participants expressed concerns about contracting mpox again and whether vaccination would be necessary in future.
Conclusion
“There are clear implications to learn from these accounts,” Smith concluded. Healthcare providers should take a trauma-informed care approach given the possibility of health-related distress, offer support around scarring and other ongoing mpox complications, and give clearer advice about any relative post-infection immunity and whether people who have had mpox should get vaccinated.
Given the severity of these accounts and of similar experiences reported in the media, he asked: “How do we ensure that future responses to emerging and re-emerging disease outbreaks are free of stigma?”
References
Smith, A K J et al. “It was just the most horrible experience of my life” Understanding social and care experiences during and after mpox illness. 12th IAS Conference on HIV Science, Brisbane, abstract OALBD0602, 2023.