“I was in depression and also asked my husband to divorce me on learning about my infertility,” says infertilitydost.com’s owner Gitanjali Banerjee.

The condition is draining both mentally and physically. With societal pressures and personal suffering, it becomes very difficult for the person to think straight and stay positive. Understanding the helplessness that builds up with the diagnosis, Gitanjali opened India’s first website infertilitydost.com that publishes genuine stories from patients and provides support to the couples. Excerpts from a chat:

You suffered through emotional turmoil when you learned that you can’t conceive. How did you deal with it?

To learn about infertility is a very complicated and emotional problem, especially in a society like ours where woman equates with motherhood. The social pressure doesn’t let you deal with it practically like with other conditions. When my doctor told me about my infertility, I didn’t visit the doctor for the next 2-3 months. My mother told me that I was taking a lot of pressure and it’s probably a result of my stress and eating disorder. At first, nobody accepts the problem, and we’re all just in a state of denial. And this happens to each couple diagnosed with infertility in India.

I had been struggling for 10 years before opting for IVF, and throughout that phase, I was very vulnerable and wanted to run away from the society. I was in depression and also asked my husband to divorce me on learning about my infertility. I was constantly experiencing self-guilt!

How did your husband support you?

My husband is a very straight-forward person, and it’s me who is complicated. He was very sorted about IVF whilst I was questioning myself. He told me it’s ok and helped me maintain calm. He is a very supportive man.

The surroundings play a huge role in bringing the morale down. What is the most annoying thing that you had faced?

It’s the unnecessary gyaan! The challenge is that you can’t express yourself because people keep asking you questions about the delay and speculate so much. And then comes – the suggestions, weird suggestions. They come up with insane logic like women should not work and working outside the home is the core reason. Personally, I also know people who ask infertile women to stay away during auspicious occasions. I was once invited to a godhbharai (baby shower) function where they asked me to stay away from the Puja which involved Havan. These things are still being practiced in India, especially North India, and even if you ignore it, deep down they really affect you. And the sadder part is it happens in really educated families, as well.

That’s supremely frustrating! You have spoken about your efforts in eradicating demeaning terms and practices of “Banjh” – how are you working towards it?

I want to curate an army of empowered and strong women who can spread more and more awareness about infertility and hold absolutely no shame for it. Especially the women who have gone through it because when they come out open and share their experiences about, people will be able to relate and understand. I as of now have a team of 20-25 women who initially were clueless about infertility and IVF, and now, they are an erudite group with confidence and dignity who volunteer for the cause. I don’t know how far my efforts have progressed but when I see these women I know it’s going somewhere good.

That’s awesome! Do you think male infertility becomes an invisible factor because society is busy blaming women? How can we eradicate the gender stigma?

Oh, society has weird reasons for blaming women.

The change in mentality is only going to take place when men and women both come together and stand for each other. There was this one situation where a couple couldn’t conceive but only the woman went for the checkup because the husband was so confident of him not being infertile. This can also be because of the fact that we talk really less about it and hence they’re not aware. Everything starts with awareness. People know about it but don’t speak in the open. You have to talk openly.

And the couple’s reaction to the news makes a lot of difference.

Absolutely! Men play a very important role during this phase because no matter what, women will always be on the front line. Men have to take the responsibility too. Both have to stay strong and support each other. I know of a case where the husband told me that because he was so strong in front of his wife, he had to cry all alone. A couple should prepare emotionally, physically, and mentally before deciding to go for IVF.

How safe is IVF and does it have an age criteria?

IVF is safe but you have to be aware of your body, the clinic, and the procedure. Age does play a role because firstly, infertility increases with age, and once you find out, you don’t have a lot of time to cure it. Ideally, it’s not recommended after the age of 45. The ethical clinics definitely won’t conduct the procedure for a woman beyond 45 but mushrooming tiny clinics can. When you’re younger, the procedure gets easier. Also, women with PCOD, hypothyroid issues should not go under the procedure. Weight has to be controlled because excess weight causes hormonal issues which can affect chances of fertility.

Tell us about the IVF clinics which are running without accreditation. 

IVF has a huge unethical market which is set only to mint money. You have to be very careful before you choose your clinic. Only 20% of the clinics in India are registered under ICMR. Clinics are supposed to register themselves voluntarily. It’s always recommended to check their registration under ICMR whenever you choose a clinic. Currently, there are only 314 clinics under ICMR in India.

How to select the right IVF clinic?

The first step is to be aware. The second and most important is for the patients to ask right questions. Ask for their documentation. All the clinics are supposed to have a counselor so that should also be inquired. But unfortunately, very few clinics are following this. Ask if the counselor is a freelancer or an in-house counselor. Always have a meeting with a counselor before confirming for IVF. The counselor needs to tell the truth, set right expectations, and then let the couple decide.

IVF mostly is a procedure of 2 cycles. It’s very rare that it gets successful in one try which means that your body will go through a lot of pain and changes. Often unethical IVF clinics put multiple embryos in the first attempt to increase success rate whereas the procedure is to put 1 embryo in 1 IVF cycle. Too many embryos lead to the birth of an unhealthy child. So many such clinics will commit to you that if it fails they’ll give cash back. They fail to acknowledge that body goes through a lot of physically draining process!

Patients need to understand that IVF is not a miracle. You need to know if your body is prepared and always be ready with plan B. Please do not be depressed with a fail attempt, something will definitely work out!

That’s quite informative. Thank you! How do you think the laws can make IVF easier and more accessible?

IVF clinics should be transparent, show proper documentation. There should be an online digital platform to know clinics’ statistics like successful cases, genuine and validity.

The government has also banned commercial surrogacy. What are your views?

Commercial surrogacy had to be banned though because of the growth in the grey market. It was controlled by corrupt agents. However, banning cannot be the only solution. You can’t put a blanket over it. We need to learn to treat problems with stronger policies and documentation. Surrogacy has been there since the time of Mahabharata.

What would you recommend to the LGBTQ community?

Adoption is the best option as of now. I admit it’s quite difficult for them.

What kind of support is required when a couple first finds out about infertility?

Emotional support is a must. People around while giving suggestions need to realize that during these times it’s also important for the person to be constructively busy, rather than sitting at home. So, a suggestion like “don’t work” never works. People need guidance and support, not sympathy. You need to connect with them. Statistics say that emotional turmoil of an infertile woman is equal to the physical intensity of the pain in cancer. While the cancer patient receives a lot of social empathy, the infertile patient receives apathy and shame.

What is next for infertilitydost.com?

We’re trying to establish an open platform to share and learn about infertility. My motto is to spread awareness and make infertility sound “normal.”

This article was first published on November 1, 2017.