Herpes Nation Newsletter Volume One, Edition Nine
Welcome Home
My Story
Shell shocked to the core . Seventeen years ago I sat in the GUM clinic . In two weeks time I was to be married to the fiance I loved . I believed he loved me . I sat in numb detatchment . This just could not be happening to me . I was planning my dress , flower girls and seating plans for the happiest day of my life . I could barely sit straight as the health advisor told me I had genital herpes and that my risk of cervical cancer was now four times higher than average .
She was a clinical battle axe . Judgemental , disapproving , unsympathetic , disinterested and definitely due for retirement as my world as I knew it crashed around my ears like foam on rocks . I was screaming in my mind but no sound would come out . I was like a TV with the sound turned down and tears that could not come . Had I infected my husband to be or he me ? Could we have children now ? I felt dirty , contagious , leper like and the clinics at that time were not PC with fish tanks tissues and glossy paint like they are now . I was in hell .
Naturally quiet and sensitive by nature this hit me hard . My fiance was supportive and also had tests . As it turned out he was an asymptomatic carrier with no symptoms . I had never had cold sores as a child . I thought I was so smart with birth control – all grown up taking care of my body – no unwanted pregnancy for me – I took the pill . But safe sex in terms of STD’s was not even a thought in my mind or on my radar – I was a clean good living girl . I was a health freak non smoking non drinking vegetarian raised in church .
Again I thought – this just CANT be happening to me . Even though the cracks I didn’t want to see in this marriage were there from the beginning I chose not to see them because who would want me now I was diseased and dirty , one of the untouchables . So marry I did and my husband loved me as best he could and took care of me when I got sick .
I had classic outbreaks , Blisters where it hurts and pain I can only describe as like sitting on a set of steak knives . First episode classic flu like symptoms , swollen glands , fever , aching . I was given acyclovir and slept solid for 3 days . I felt so weak and knocked out I could hardly raise my head to eat or open my mouth for a fork full of food . It was BAD . I felt I must have been very wicked in a past life to deserve this suffering . For the next 10 years I didn’t have to think about herpes too much unless having an outbreak as my husband and I were both infected . We had a beautiful child together in this time . This brought overwhelming moments of fear for me . Would I infect my baby ? Would I have a normal delivery ? By this time hospitals had got a bit more clued up and with the times and I was reassured / well cared for . By this time I had also become a qualified nurse so was armed with the powerful ammunition of professional knowlege as well as my own experience . I was becoming more empowered and less scared .
I split up with my husband after 10 years together and we divorced . Now I was facing new herpes problems . How could I tell a new partner about my condition . While I was becoming more at peace with the virus the stigma was and is still strong . Herpes is not ” cool ” like HIV . There were no celebrities queueing up to promote herpes awareness and support . It was still seen as a grubby seedy dirty disease and not dinner table conversation .
As I could not yet face ” the talk ” I went in to an emotional desert for some time choosing to stay single and concentrate on working and parenting to the point of exhaustion . I yearned for touch , for love , for deep love which is a gift of herpes as I felt I could not put others health at risk and no longer saw any point in superficial shallow flings . For me the price would be too high and I found my self worth , self confidence and inner steel beginning to surface at this point . During a bad outbreak there was not a part of my life unaffected by herpes . How many of you would call in sick to work with a raging herpes outbreak ?!! Sorry can’t work today , can’t sit straight in a chair to counsel patients ! If my son was ill I still had to look after him , cook , clean , work etc . We women are so so strong . I learned how strong I am from herpes among other life experiences . The clinics continued to improve and philosophies round sexual health changed .
Now in the UK generic acyclovir was available ( cheap to prescribe ) , together with famvir and valtrex . More was also becoming known about herbal treatments and remedies and a holistic approach to health keeping the whole body , psyche and spirit in balance and connected . In my herpes journey I have probably tried it all . Trial and error and finding what works for you individually for you are what I recommend . Eventually I did meet someone special . I was still too freaked out to have the talk so wrote my partner to be a letter telling him about my herpes . I cried when he rang me the next day to tell me he had received my letter and that it was ok . He thought no less of me . In fact he thought more of me than before because of my courage and honesty which he respected . Those words were like being wrapped and held in cotton candy or fleece duvet . I was cartwheeling around the room !! Imagine that – a sex / love life after some years and much pain and soul searching in herpes wilderness ! We had a happy and productive relationship for 3 years and then separated amicably as we were moving in different directions and very different people .
But this I do not regret . I have learned to love again . I have learned that the grass can flourish again after devastation and love endures all . And I mean real deep love . Not flash in the pan sex but real deep tender intimacy . The kind of natural comfotable caring sex , exciting sex , sex of many faces and colours but infinitely loving . Herpes helped me find my real self and has peeled away my defences , barriers and judgements one by one until only love is left and only love counts ultimately . It has made me more courageous , more loving , more forgiving , more heart centred , more grounded , more balanced and centred . I have lost the anger . It burned out of me long long ago and now love remains . I will never fall apart again because what I have gained replaced what I never lost – my self , the true god-self in all of us that is love , joy , peace . And this I wish all of you . Blessings and every day a beginning .
Kathy Obie
Another Journey
by Anonymous
My journey with herpes started week 33 of my first pregnancy. I had met my husband a year prior and we had enjoyed a whirlwind courtship, I had moved across the country to be with him, and we were starting a most exciting life – we started a business together and became pregnant. It was thrilling! The pregnancy was progressing fine but was marred by vaginal warts that my midwife could not help me with, but my husband researched alternative creams online and we found one that worked. So when I suddenly came down with a new “wart” (which was a lesion, I didn’t know it) and a high temperature that would not respond to anything, we got scared. I checked into the hospital and listened to my baby’s heartbeat rise along with my temperature.
It took several days, but finally the painful lesions were tested and I found I was a carrier of genital herpes. This felt like a death sentence to me. I was scared, embarrassed, actually mortified. My husband felt the same way but was completely supportive of me. I was prescribed Valtrex and sent home. The Valtrex did work, the fever broke and the lesions slowly disappeared, but my birthing plans dramatically changed and I planned a c-section with a new doctor. Even worse, my insurance company didn’t support Valtrex and I wasn’t told about acyclovir so we were paying a backbreaking $200+ per prescription. It wasn’t until after the birth that we researched and found that acyclovir was covered by my insurance, and requested it from my doctor.
I have never been one to take medications so the thought of a lifelong dependency on acyclovir didn’t sit well, but to be honest, I didn’t have the presence of mind to address this problem. Even with the drug, I had outbreaks every week. Between the stresses on my body with a new baby, and my complete avoidance of my feelings about my herpes, I lived with the medication for a long while.
Finally I researched online and found Christopher Scipio and his book, Making Peace with Herpes. It was wonderful to read that there were alternatives out there. I contacted Christopher and started his program, but it didn’t go as well as I hoped. I had trouble getting enough sleep. I was scared to stop taking the medication. I didn’t trust that my body’s immune system could recover. And, in retrospect, I did try hard but wasn’t able to follow his program as well as I wished. I am not sure if I just wasn’t ready, or I didn’t believe in myself, or what it was… and then I got pregnant again and believed the program wouldn’t work for me until after my new baby.
Things happen if you ask, though. I remember asking God for help and the months of my second pregnancy, I worked with another herbalist who did provide me some relief from the ongoing symptoms. She believed that I could recover enough to have a natural birth, but my husband and I didn’t dare risk the health of our 2nd child so I had another c-section. The herbalist assisted in my recovery from the 2nd c-section so well, I recovered much quicker than from the first one. My 2nd child, also, didn’t have the colic my first child had, I believe due to her prescribing of a probiotic to both my child and myself. I started to believe I could help myself, that my body could heal itself, more than I ever did before. I had other successes, both spiritually and health-wise. My relationship with God and my Spirit improved; I learned EFT; I learned how to meditate.
Christopher reached out to me when my 2nd child was 6 months old, and I re-started his program. This time, what an amazing difference! I was able to follow his program. I was less judgmental about my lapses. It is not easy for a mother of a toddler and an infant to get up and perform yoga first thing in the morning, in an un-interupted manner, for 20+ minutes! It is not easy to always eat the correct foods when nursing, and craving, and starving, and exhausted. It’s not easy to find time to meditate! But I tried, and when I failed, I got up and tried again, and I depended heavily on the black tea bag therapy when I felt pre-lesions going on. I realize that the first time around, I was in denial. I would feel a pre-lesion and panic – “Oh, maybe it will go away on it’s own, PLEASE” – and not address it quickly and definitively as per Christopher’s program. This time, I didn’t panic… and when I stopped taking acyclovir, I threw myself a party. Only my closest friends knew why I threw myself a party, but who cares!
Genital herpes reaches its tendrils into so many aspects of life, and I feel that slowly, but courageously and with honor, disengaging those tendrils is part of the process. I felt angry towards my husband for a long time. Perhaps he was the one who gave me this curse! (He never got tested, why not?) He didn’t want to be reminded of it. If he saw my medication, he told me to hide it so nobody would see it. He feared that one of the nurses in my doctor’s office, who was an extended family member, would read my chart and find out and tell the family. He asked me to switch doctors for this reason, which I refused to do. It hurt me to be treated like a leper. But one day we had a large argument about it, and he told me – it is so embarrassing for me to think that my family might know about this, he told me. I *do* support you, I just want you to not talk about it to family, and to hide the medication so I don’t have to worry about people seeing it. And suddenly it clicked for me – I’m not the only one here. He has feelings, and fears, and I can honor his feelings and fears too without compromising myself. How hard is it to hide a medication? How hard is it to ask about my doctor’s privacy policies? How hard is it to be more selective about who I have in my support system? I feel that having compassion for the feelings of your partner is very important. Each situation is different, but I am glad I was able to be more compassionate and supportive of mine.
One day, my husband confessed that he had warts “down there” and he was scared he was hurting me with them. He went online and found treatments for them, and he told me he prayed. He started the treatments and a week later happily told me that they were working wonderfully and all the warts were going away. It was the same time that Christopher’s program started really taking effect for me to. I thank God for this; we helped each other heal in our own ways, I believe.
It’s been 3 months now and I feel as if a weight has been lifted off my body. I feel terrific. I keep thanking Christopher for his brave publishing of his program. I can’t tell you how sad it is to fear a sexual encounter. For so long, a part of me would cringe… I expected the immediate outbreak after the act. That fear has gone away and I have completely reclaimed my sexual joy, in a way even deeper than ever before. I am so grateful for my womanhood, my body, my wonderful immune system that with just some help and love, was able to heal me and my family.
I’m a better person because of Christopher Scipio. Not just because I no longer have herpes outbreaks, but because I have faith that my body, and the bodies & souls of my children and family, can be holistically and honorably supported. My oldest child had recurring eczema; instead of continuing prescription medication, I asked Christopher for a recommendation and a herbalist he knows helped us change my child’s diet, provided supplements, and provided an essential oil balm. It isn’t easy to change your life… or a family’s health… but that is what must be done, in my opinion, to maintain the health of a family. I am eternally grateful to Christopher for pointing me down that road.
a letter of love
Dear Herpes
How are you today? I can’t see you but I know you are there…
It’s been a while since you have made an appearance but that doesn’t mean you are gone forever, I know you will always be there, waiting, silently, patiently.
It has taken me nearly 3 years to actually address you like this, and for this I apologise for being so rude and taking so long to communicate! You see, it has been hard for me to come to terms with sharing my body and my mind with you.
I guess I never thought I would be spending my life with you, and my lord, do you have a bad reputation! Plenty of people make jokes about you, and now you are part of me, it feels like those jokes are aimed at me.
I have been holding onto feelings of guilt and shame since you first appeared, but why is this!? I am very much a positive person, and would never judge others because of you.. Yet I have let issues of negativity surround our relationship, with this negativity building into depression.
The main problem lies in acceptance; when you first affected me it was hard to accept and I felt like I was going through it on my own. I should have talked to “Jim”, he told me I could talk to him about it, he had been through it himself and most probably he wanted to connect with me about it. I couldn’t remember our conversation when he told me you were with him as we were drunk, and we went to having unprotected sex, without properly discussing it sober. It must have taken a lot for “Jim” to open up to me, but I always felt that him passing you on to me could have been prevented.
Eventually I accepted that you were part of us both, “Jim” and I, and because I thought we were in love it was all ok. However, our communication was never the best and our relationship disintegrated, I wanted to see the world and felt that “Jim” was holding me back; he wanted me to be the dutiful girlfriend – someone who slotted into his life – not off pursuing silly adventures. Afterwards I went through anger and regret, and poor “Jim” was the one on the receiving end. He must have experienced the rejection he was worried about – however, it wasn’t because of you, herpes, you just made it much clearer that me and “Jim” weren’t right for each other.
Then it was just you and me. I accepted you into my life, but because of my hesitation to open up to another person initially, the thought of sharing our relationship in the future weighed heavily.
I still felt shame and guilt but learned to hide it, and learned to avoid situations where I might get close to another man. It would literally fill me with anxiety if I thought there was a chance of me getting intimate with someone. I craved affection, yet, knew there was a big herpes shaped barrier in the way of any possible intimacy. I couldn’t talk about it with anyone, and felt like I was living a double life.
Eventually I met someone else but I still couldn’t open up about you. I was scared, scared of rejection, of hurting this person, of passing you on and because I was scared I didn’t say anything. Then an almighty feeling of dread emerged as I thought I could have passed you on, and he might not even know. I told him and the relief that brought was only second to the fact he had not contracted you. At the time I said that I would rather be alone forever than go through that again… but of course, that is not true. He didn’t think it was such a big deal that you and I were together, and even though other circumstances meant me and him couldn’t be together, it gave me hope that people – men, would have compassion and understanding if only I had the courage to open up about you.
I don’t want to keep getting into the same situation, the same cycle of fear and shame and guilt, although I’m worried I may be too late. I have again met someone else but have retracted from being honest and upfront about you. I’m not sure where it is going but I know in order to go any further with him I have to first face my relationship with you, and if me and him are to carry on he must know the truth about us.
I want to love you and cherish our relationship and appreciate what you have taught me!
I am young, I am attractive, I am a funny, I am healthy and I need you herpes… to help me work out who is going to love me for me – because you and I are one! Perhaps the barrier is a good thing, it means I can have a relationship on a much deeper level. Perhaps I need to learn to open up before I become intimate with somebody, perhaps it is crucial and it was destiny you and I came together.
For me it is not the physical scars you leave but the emotional connotations and deep connections to reoccurring feelings of rejection and self-doubt.
And I know it is not you that brings those into our relationship; but me.
I am seeking compassion, trust, forgiveness and love… But first I need to find them within myself.
This is the first step in turning our relationship around, my letter to you, facing up to our life together, asking for us to be friends, thanking you for coming into my life. Beginning a path where I can help others build on their relationship with you, and one day, hopefully helping to change your relationship with humanity. It is all about love, so I am taking measures to learn to love you, and hopefully one day,
someone will love us both.
Yours truly
Natalie
Email Christopher Scipio if you would like to be added to the newsletter’s mailing list
