Patient reflections

'Getting diagnosed and moving beyond'

Herpes - what a diagnosis. The possible judgements, stigma, misunderstandings and pain that come with it may seem overwhelming; they did to me when I first received the news. I soon understood that many doctors know less about Herpes than I did and the doctor that took my tests and gave me the diagnosis was one of the classical cases. I am one of the growing numbers of individuals who have Herpes without having 'recognisable' symptoms. The only reason I found out was that my partner at the time had an outbreak. We both went to the doctor together. The doctor took a swab from my partner and had a good look at me. There were no blisters on the outside and she proceeded to provide us with misinformation after misinformation.

She told me that: women always have really severe symptoms; symptoms are always external; that there was no reason for me to have blood tests as it was certain I did not have the virus; and that my partner must have contracted the virus from someone else.

The doctor tried to talk me out of getting a blood test but I insisted and am grateful I did!! When my partner and I returned to the same doctor the story took on a completely different light. My partners swab came back positive but his blood test negative. My blood test, however, came back positive and all of a sudden the doctor said I must have had herpes for years and that I passed it on to my partner, as he obviously hadn't developed antibodies yet.

She also told us that herpes type-1 and type-2 do not cross infect (meaning you cannot get oral herpes on the genitals and vice versa).

Her attitude was atrocious. She made no attempt at apologising for misinforming us at any stage. She did not pass on any information about herpes other than a small brochure from the Facts Pack that provided some helpful information to my partner. I decided to get information for myself and went on an internet quest. I found some really valuable information and realised exactly how little specific information is known about Herpes as it acts differently with each individual.

The next doctor I went to was a lot more understanding. He mentioned support groups and I went home, got online again and found the 'Herpes in Brisbane' group. Becoming a part of this group, chatting to and meeting others with herpes 'normalised' the experience a bit for me and helped lift me out of a growing situational depression. My first response with the diagnosis was extreme shame and anger. I wanted to find out where I had received the virus from, which is virtually impossible, as I could have had it for years. I felt like a paria, certain that no one would want to be in a relationship with me. My own had broken down not long after the diagnosis and I saw myself being alone for the rest of my life. Somewhat dramatic thoughts but as I spoke to more people with herpes I learned that these thoughts were quite normal. The fear of the stigma attached to herpes is incredible and unfortunately, some people have felt quite discriminated against and judged by others.

I chose to face this fear by being quite open about herpes.

I chose to tell my family first. Fortunately, I have a supportive family who have been very understanding and inquisitive. I have told most of my friends, new as well as old, and have only encountered support from those who were genuinely my friends. A few who had different agendas than just friendship were quick to disappear but that is ok. Herpes has in that sense become my emotional guard dog. I have later shared that I have herpes with my peers at uni, in tutorials when relative to the topic and have found no judgement. So in sharing with others I hope that I have raised some awareness, illustrated that herpes can come to all of us and that the fear attached to herpes comes mainly from lack of knowledge and understanding. On top of that the support group provided me with friends, people whom I could connect with and talk about life in general, not just herpes and also with a new relationship that has lasted for a while now.

My other way of dealing with herpes was to get as much information as I could. I read countless articles, talked to doctors and tried to get an image of the virus in my mind, to see it as just that, a virus. Doing that helped me understand that herpes says nothing about who I am as a person. It says nothing of what type of life I have lived or what choices I made. Herpes does not make me. I am me, regardless of the virus that is 'hitch-hiking' if you like, a blind passenger in my body, found out but not that easy to get rid of.

I still get a bit nervous about sharing that knowledge with new people but realise that people are not entitled to know unless I wish to be intimate with them. And should I encounter people who would reject me because of herpes they are not people for me.

In connecting with the ‘Herpes in Brisbane’ support group I also realised how lonely herpes can make us feel. People so desperately want to be loved for who we are not what we have or don't have. That goes twice for people with herpes. If you read this and you don't have herpes please keep an open mind. Learn about the virus if the thought of it scares you and don't reject a person with herpes who comes to you with a genuine spirit. They may turn out to be your best friend or that long missed soul love. If you read this and have herpes or any other STD and you don't know how to move beyond the stigma, connect with people in safe environments like support groups and seek out information about the virus. See it for what it is: a virus, not a label or a box that judges you or your choices.