DES, Guilt, Fear, and other Emotions

The results of a recent French study highlighting the psychological problems associated with exposure to Diethylstilbestrol (DES) and other synthetic sex hormones really confused me. Even though it may be extremely difficult to scientifically establish a strong link between DES exposure and mental health for many reasons, one just needs to read or listen to the stories of DES victims to realise how badly these victims have been affected not only physically but mentally. All these stories have one thing in common, they all tell a story of guilt, anxiety and fear.

Guilt: most DES mothers and daughters blame themselves

DES-exposed individuals' emotions guilt, fear, anxiety, stress, anger, and frustration image
Emotions felt by DES victims include guilt, fear, anxiety, stress, anger, and frustration - image source Scientific American

How would you feel as a mum if because of a drug that you took during pregnancy, your child is suffering from cancer, fertility problems, and / or psychiatric disorders? Most mothers who took what was believed to be at the time a revolutionary drug to stop them miscarrying, are understandably feeling guilt and struggle in their day to day life to cope with the burden of this guilt pushing some of them to the brink of depression. Most of the time, it affects their relationship with their daughters and sons. Even though I get on really well with my mum, DES has definitely left a dark cloud on our relationship. A life with DES and its consequences is not what she wanted for me and my husband. For the great sadness deeply felt when I miscarried, all the tears when I thought I would never have a child, the stress of a surgery, the constant anxiety during a high risk pregnancy, how could I blame my mum when she was just following in good faith and trust her doctor’s prescription? Yet, she keeps feeling sorry for me and apologizing for all the troubles caused by Distilbène® (the French name under which DES was prescribed to pregnant women in France until 1977).

My mum, unlike many other DES mothers, didn’t grief a daughter killed by one of the most devastating side effects of diethylstilbestrol: vaginal cancer (ccac). She didn’t go through the psychological pain of accepting that she would never be a grandmother. I, unlike many other DES daughters, never gave birth to a baby born too early to survive because of premature labour (another dreadful consequence of DES exposure). With 3 daughters, I am one of the luckiest DES victims (at least so far …) and I often even question whether I should consider myself as a DES victim when so many women have died or have seen their chances of becoming a mum ruined by the consequences of this drug.

When I read in the book “Moi, Stéphanie, Fille Distilbène” by Stéphanie Chevalier, that I was not the only DES daughter feeling shame and guilt for somehow escaping the worst, it brought tears to my eyes. In her very moving book, Stéphanie tells her DES story but also the story of Véronique who despite a very difficult pregnancy gave birth to a beautiful little boy. Véronique says: “I feel bad that I had a son when so many DES daughters will never know the joy of motherhood”. Stéphanie explains what her lawyer, Mrs Martine Verdier, replied to the DES-exposed daughters and sons invited to discuss DES trials in a meeting organised by the French association “Les Filles Distilbène” of which Stéphanie is President: “There is no such thing as being a “half victim”. What differentiates the DES victims is the extent of the prejudice caused”. Before the joy of giving birth, some women miscarry; others loose a child in the late stage of their pregnancy, many never even have children and divorce as a result but what is sure is that DES-exposed individuals, regardless of the extent of the physical damage caused by the drug, all have to suffer from the psychological consequences of the painful situations that they have to face throughout their lives because of diethysltilbestrol.

To carry on the topic of guilt, what if the third generation (DES grandchildren) have been adversely impacted by DES? What if my daughters are at a higher risk of cancer, what if they too have uterine malformations and won’t be able to have children. Will I feel guilt? My mum didn’t know when she took Distilbène® what the consequences would be. When I had my daughters I knew I had been exposed to DES and I knew there may be consequences on the third generation too. Will they blame me? I don’t even want to think about it…

DES tragedy, who is to blame?

I definitely think the wrong persons are blaming themselves. But who is to blame for the DES tragedy? Doctors who continued to prescribe the drug despite warnings about its side effects? The FDA who didn’t ban it and today recognizes the DES tragedy but refuses to apologize to the victims? The pharmaceutical companies who heavily promoted DES use to doctors? Governments who failed to protect the health of their citizens when health warnings were issued? Am I missing someone? something? So many questions remain unanswered. Surely this drug scandal could have been avoided like many others such as Thalidomide (the sedative drug introduced in the late 1950s and withdrawned in 1961 due to teratogenicity and neuropathy). Surely other people than the DES victims should feel guilt and shouldn’t be sleeping well at night!

DES “Epée de Damoclés”

Anxiety and fear, two more psychological consequences DES-exposed individuals have to deal with. Because of the risks of cancer associated with DES exposure, DES daughters and mothers have to be checked more regularly than other women. I have no doubt that like me they all get very anxious and fear that the results of their regular DES examinations (including smear/pap test, mammogram, etc…) may be positive when they come in. What about the fear of losing a child at any time during a DES pregnancy, the fear of seeing your partner leaving you if you can’t give him a son or a daughter, the fear of what will happen to your children if you die from a cancer caused by DES? The list of these DES related fears and anxieties is long and I am not even mentioning all the other emotions such as anger and frustration often felt by DES victims.

Whilst some people may question the effects of DES exposure on mental health, there is no doubt that diethylstilbestrol has not only caused physical damages to the children born from mothers who took the drug during their pregnancy, but also caused a lot of pain, and psychological suffering in DES mothers, daughters, sons, and their families. Even if there wasn’t any link between DES exposure and mental health which I doubt, the psychological consequences of the problems that DES brought into people’s lives can’t be undermined. More research is needed to establish a link between DES exposure and mental health. In the meantime, the psychological difficulties such as anxiety disorders, depression due to the overwhelming feeling of guilt experienced by DES-exposed individuals must be acknowledged and health care providers should take them into consideration when caring for their DES patients.

International Women’s Day

Celebrate DES mothers & daughters who advocate for all DES victims!

Tuesday 8th March 2011 marks the centenary of International Women’s Day (IWD). Celebratory events are taking place across the world marking women’s achievements and contributions to society.

Since 1911, International Women’s Day offers the perfect opportunity to appreciate the women who have the biggest influence in our lives whether they are politicians who are a making difference in our local community, celebrities we admire, or simply mums and grandmas who balance work and home beautifully or to whom we look up to.

This Tuesday 08th March, why not make International Women Day 2011, a day to celebrate DES mothers and DES daughters.

Join “Journal of a DES Daughter” in celebrating the courage of all the women who find the strength to fight every day against the devastating side effects of diethylstilbestrol and acknowledging the tremendous work of those who dedicate their lives to advocate for the victims of the DES tragedy.

Join the International Women’s Day celebrations by:

  • Attending the Facebook event “Journal of a DES Daughter – International Women’s Day”
  • Changing your facebook status to read: “Today I celebrate International Women’s Day and the DES mothers and daughters who advocate for all the DES victims”.
Val Pat Cody DES Action USA co-founder image
Val Pat Cody, health activist and DES Action USA co-founder – Photo courtesy of DES Action USA

Let’s celebrate women such as Val Pat Cody (health activist and co-founder of DES Action USA who sadly passed away in September 2010), Anne Levadou (President of DES Network France), Andrea Goldstein (DES activist and DES historian), Carol Devine (founder and coordinator of DES Action Australia – NSW) and Caitlin McCarthy (award winning screenwiter currently working on Wonder Drug the true story of DES); as well as all the activist women who contribute to raising awareness about DES exposure and speak out on behalf of all the DES victims.

These women who give their lives to help others are a true inspiration to me and I am sure to many of us. Carol Devine comments on her blog: “Pat was a remarkable women. During the process of our establishing DES Action Australia-NSW, Pat was a great mentor and friend. If not for her invaluable ideas and encouragement, the group may not have lifted off the ground. She will be very much missed“.

Join the “Journal of a DES Daughter International Women’s Day” facebook event.

Happy International Women’s Day to all DES mothers and daughters!