Traumatic Shame in Living with HIV

Traumatic Shame in Living with HIV

Over the past 2 decades, there have been tremendous advancements in the treatment of HIV. Despite this, there is still a lot of shame that people live with when they have HIV. HIV is associated with illness and even something as silly as “sexual irresponsibility.” It’s also associated with severe illness and even death, even though people are able to live healthy lives when they are positive.

This leaves people who have HIV with fear, isolation, and shame. For gay men living with HIV, it can add one more layer of shame to their journey of self-acceptance. And with shame there can always be secret and silent suffering, avoidance, and compartmentalization.

There are more people living long healthy lives with HIV than ever before. People who are undetectable can’t transmit the virus to other people. Even still, many people get the diagnosis, and go into denial and hide this reality. They avoid starting the medications they need to lower their viral load. They hide it from their loved ones.

Others start their medical journey and take the medical steps that they need to, yet struggle with the emotional journey of living with an illness with so much stigma. They know that they are likely to be rejected for romance or sex because of a diagnosis (at some point).

Then there are people who simply compartmentalize it. They tell themselves that it doesn’t impact them and it doesn’t matter. However, when they unpack their feelings about this, they realize that there is a lot of buried, negative emotion surrounding it.

So what do you do about it?

Confront the bullshit

There is still a lot of stigma out there about HIV. This stigma is largely based in myth. HIV is not a diagnosis of promiscuity, sexual deviance, or sexual “weakness.”

Also, sex and relationships with HIV that is mindfully managed doesn’t pose extreme risk to someone who is in a relationship with that person. This is something that needs to be addressed, rather than treated as though it’s a fact.

You can’t make people want to learn more about your diagnosis. However, you can gently confront misconceptions. Let people know when they are wrong and why it matters. Most importantly, let them know why it matters to you. This can help to make gentle shifts in your life, so that people learn more about HIV, but most importantly learn more about you living with this diagnosis.

There are generational differences, but all can have trauma

The experiences, loss, and fear that people lived with in the 80s and 90s relating to HIV and AIDS is often still with them. There can also be elements of isolation and shaming that can continue to have traumatic residue that is left behind.

This isn’t to say that the experiences of younger people are meaningless. Many still are ostracized from their families and friends. Others just hold their diagnosis in silence, out of fear of being shamed.

Coping with trauma

There are many ways to deal with trauma. Therapy is one of them. By using EMDR or Somatic Experiencing, you can find comfort in developing new meaning and working through trauma loops. If you’re a member of the LGBTQ community, look for an affirming therapist. These therapists are going to have an understanding of the community dynamics that can occur, but also respect the experiences you have as a member of the community.

It is also important to build shame resilience. Shame can make you feel disconnected and alone. Even worse, it can make you feel unworthy of connection. Knowing how to identify shame in your life, but also how to cope with this can help you manage traumatic experiences.


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