Lived Experience Forum

[Morph]

Your sharings have brought tears to my eyes as well. Thank you for opening up.. I am newly diagnosed hsv2.. as in 5 days ago... it has turned my world upside down. I warned a sexual friend only to have them block me and walk away. I don't trust friends enough to share it and definitely can't tell my family. Reading your experiences of pain, isolation and rejection break my heart. The stigma and social isolation is heavier than anything I have had to carry before. It makes me want to stand up and break this stigma. A diagnosis does not equate to promiscuity or uncleanliness.. and yet here we are anonymous sufferers sharing the burden of this unbearable pain. I already felt unlovable, unworthy and not enough. I was single for 7 years prior to this. I can't imagine what the future will hold. Except that somewhere in the back of my mind there is a recognition that this is a great way to sieve the frivolous men with shallow sexual intentions from my life. To scare them off like a wicked witch on halloween. It will help me focus my energy on my goals and keep me on the straight and narrow. The more we can talk about it the more the stigma is reduced. I've had cold sores all my life but never felt this shamed. Its crazy. As a newly diagnosed patient with a passion for health I want to get to a place where I can talk about this openly. To normalise it and help other people struggling with the effects of diagnosis. To listen to music blaring at 2am when my emotions are uncontrollable and my pain inconsolable. To connect with you all in this dark and lonely place. Because none of us deserve to suffer alone. There is strength in community and I hope I can connect with you here. The world is a cruel and lonely place and so much misinformation that feeds the stigma surrounding our diagnosis.  Its nice to know I'm not completely alone. Thank you for sharing your experience.. xxxx

[Goldie55]

Hi there,

I can truly resonate with everything you’ve mentioned in your post. I’m in a place where I don’t feel comfortable disclosing my diagnosis with anyone, unless I feel safe to do so. It’s hard to trust people with something so personal & which has so much stigma attached. I’m still trying to accept myself lovingly too. It has made me feel degraded and unclean, but deep down, I know this is not the truth of who I really am. Anyway, thanks for sharing 🙂

[Tsl-jrlyx]

Hi hope, I may have HSV2. What’s it like living with it? And what symptoms did you display first? 

[Mutual_Moments]

Hey @Tsl-jrlyx,

I have been living with herpes-simplex 2 for ten years and would like to share some of my experience with you.

I was young when I contracted herpes and was worried that it was going to have a major impact on my physical health and my capacity to connect with others intimately. This was not the totality of my experience. 

Though there are times in which I have experienced physical discomfort and the impacts of stigma around STIs, I have also experienced a lot of acceptance and understanding. I have a great relationship with my GP who has supported me to connect with treatments that suit me. Outbreaks can be managed with good medical support, it's worth seeking a GP who has experience with this form of medical care. I have also spoken to a therapist to move through the feelings of shame that I've been conditioned to associate with having herpes. 

At the end of the day herpes is a viral skin blemish. Unpacking the stigma can be difficult but I do feel that there has been a lot of progress in the societal view relating to herpes and there are resources that can assist our personal journeying with this. Connecting with a good Sexual Health Clinic can be beneficial not only for testing and treatment but also for dispelling misinformation. 

The more that I have spoken about it over the years with friends, peers and medical supports the more I've learnt how common it is. Communication around herpes has led to me developing my communication skillset and the health of my relationships generally. 

My sharing here is to offer insight into the lived experience of someone who has struggled with the difficulties that can come with herpes, and has found that in accessing good holistic support I was able to connect with treatment and disconnect from stigma. 

This thread was started in 2019 and doesn't seem super active. I'm glad that I saw your post. If you have any questions or would like to speak to someone regarding your experience, I'm open to answering questions and holding space. I hope what I have shared is useful.