Hoping To Make A Difference

I was recently asked to participate in a Canadian study on mental health during and after infertility treatments.

I was intrigued by the study.  But, honestly, I wasn’t sure that I wanted to participate.

  • I never underwent IVF treatment.  Heck, I never even had an IUI.
  • I feel like a bit of an impostor in the infertility world, because we are fertile. Getting pregnant is the part of pregnancy that we are good at.  It’s staying pregnant that we suck at.
  • I’ve started to put that part of my life behind me, do I really want to re-hash it?  Do I really want to bring up all those horrific memories?  Do I really want to relive our doctor appointments that can still bring anger rushing through my veins, our trip to an abortion clinic, etc.?
  • We never ended up with a successful pregnancy.  So in the perspective of many, we never beat infertility.

But, after lots of thought and research, I decided to participate.  In my humble opinion the university is one of the top in our country (one of my post-secondary degrees is from the same institution) and the principal investigator has an incredibly impressive CV. I have now completed the initial survey and even decided to volunteer for a one-on-one interview.

I decided to participate for one simple reason:

I have a formal opportunity to add my voice to a collective of individuals who have experienced infertility and the potential life long mental health consequences.  Maybe together we can advocate for higher quality complete health care.

Dredging up my struggles and my emotional response to all of it, is worth it if my voice will help encourage change.

I decided that in order for me to make a difference in the infertility struggle, I have to add my voice whenever I can.  And, this study is a perfect opportunity to add my voice and hopefully make a difference.

I hope that my voice will make it clear that:

  • Mental health and infertility struggles are intimately linked and go hand in hand.  I cannot speak about the mental health struggle of IVF, but I can speak to mental health struggle of constant medical procedures, unknown diagnosis, tww struggles, and negative pregnancy tests, miscarriage/loss.
  • Some of us will never be successful at making a living baby and our voices matter!  Our experiences of constant pressure to keep trying at all costs are important!
  • I speculate that constant loss is detrimental to anyone’s mental health.  I know it was for me and I’m still battling the repercussions of it.  Simply, constantly experiencing death of babies and death of hopes and dreams, for years upon years, is bound to cause both short and long term problems.
  • My local clinic provided me with such poor medical care at times that I had to seek out my own mental health counsellor.  I sought our my counsellor not just to deal with mental health consequences directly from RPL but also to deal with the damage the actual clinic was doing to my mental health.  Heck, in one appointment with my counsellor we discovered that just a phone call from my clinic resulted in my inability to breath normally.  This type of reaction to the stress your own fertility causes simply isn’t okay and should never be the case for any women / man / couple struggling with infertility.  Basic mental health care should be encouraged and provided at every single appointment at a fertility clinic.
  • Infertility and loss impact everyone differently and we all need to be treated as individuals in our care.

And so, I’ll participate.  And I hope that this experience isn’t damaging to me.  I hope the questions are decent and the conversations occur in a supportive and compassionate environment.  And more then anything I hope that together the participants voices make a difference for future women experience infertility, miscarriage and loss.

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25 Comments on “Hoping To Make A Difference

  1. I think you’re right… I sometimes think infertility is a weird blanket term to describe a miasma of feelings and experiences, just like miscarriage doesn’t adequately convey the very varied experiences people can have incorporating loss. Harks back to a comment I made the other day about “abortion” – a late term medical intervention in a pregnancy that won’t produce a viable child / cause damage to the mother is called an abortion. So is a pre-12 week pill pop. (Flippantly put I know, but I mean to say they are completely different experiences… one involving having to give birth to a dead baby.) Loss is loss, and I am sure that your voice is a valuable one to add to the study.

    Liked by 1 person

    • Yes, I completely agree. So many of our medical terms don’t do justice for the amount of possible scenarios included within. I’ve never felt like an infertile person because we get pregnant, but yet, that’s the category we are put under. And as you say, abortion can be used to describe the politically charged termination of an unwanted child, but it is also used by the medical community to describe a miscarriage or a termination of a much wanted child. And by using that word for so many circumstances, it absolutely causes damage to those like me. And, something as simple as the terminology used by doctors and medical professionals can have a dramatic impact on the patient.

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  2. I’m glad you’re participating in the study. Your voice is an important one, and it’s courageous of you to share it. If UofT is the University you’re talking about – I work here in the Psychiatry department. Chances are I know the principle investigator!

    Liked by 1 person

  3. Good for you for participating in the study. You’re certainly not alone among women who resolve their struggles with infertility by deciding to adopt, so I’m sure your responses will be helpful and applicable to many women who might have had different experiences with infertility than you but have resolved it in the same way.

    I wrote a post a while ago about participating in a study on the workplace climate for women in my field of physical science, in which I wound up talking about our pregnancy loss with the investigator. I think you’re right to anticipate that it will be emotionally difficult and draining to recall and talk about your experiences again as part of the study, but I hope it will also feel good to know that your experiences will be reflected in the study and that you’re helping a broader community by providing information and talking about the shortcomings of your medical care. I hope you have a good experience with the study and am looking forward to hearing more about it!

    Liked by 1 person

    • Thanks so much for your encouragement! It’s funny you mention how your pregnancy loss came up in discussion in a workplace climate study – I expect my workplace and employment to come up in a discussion about infertility! The real fact is, that once you go through this stuff, it impacts all aspects of our lives, it permeates into every single thing we do.
      Also, good for you for participating in that study! As someone who works in a male dominated industry, I’m always excited to hear about this type of study! 🙂

      Liked by 1 person

  4. Oh wow! That is so great. I would love to participate in something like that. I feel like there is so much missing from this area of research. No one prepared me/us for the mental mind circus that comes with infertility and IVF. In the outside world, everyone seems to think it is just a physical experience but that is so far from the truth. I am not the same person I was before all this…I recognize that it wreaked havoc on my head…fortunately I think everything is for the better. Good for you for participating!

    Liked by 1 person

    • You are right, infertility (as unique as that really is for everyone), is not just physical. And yet if you ask most people, including doctors, that’s the first thing they seem to care about. Heck, many doctors at our local clinic (i.e. all) have never even asked us about how we are emotionally. And, that’s just not right and overlooking this critical component of holistic care is not helping patients.

      Liked by 1 person

    • Yes, studies like this are definitely needed. I think the more voices advocating for better holistic care during infertility, the better as care for future generations of women will be improved.

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  5. Thank you for finding the strength to participate in this. I imagine it won’t be easy but you’re right, it is so important for more information to be out there about the effects of infertility.

    Liked by 1 person

    • At the end of the day, I decided I had to participate because it’s all about adding to the information about the effects of infertility. Hopefully this study will help at least one other person have an easier time.

      Liked by 1 person

  6. Sending you strength as you add your voice. I fear the researcher may be getting more than they bargained for in this study! It will be very hard for this person to digest. Thank you so much for adding your voice!

    Liked by 1 person

    • For some reason I think the researchers are going to hear a lot of the same – a lot of disappointed men and women who didn’t receive the basic mental health care that should be a minimum standard. I think they will hear from people who to this day carry the scars with them on a daily basis, because the damage was just so great!

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  7. I’m glad you’re doing it. It will help so many people in the long run. For me, my mental health took a HUGE hit. The first two years I could not admit it to myself because like a lot of people, I’m good at ignoring my own discomfort and soldiering on. Year three is when my drinking sky rocketed between cycles/attempts and that’s finally when I let myself take a good look at my life and I went: Oooooh shit, I have become a husk.

    If formal research is what it takes to get more awareness then I’m all for it 🙂

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  8. I’m glad you’re participating! I kinda wish there was a study like that going on here, I would totally do it. So what if you never underwent IUI or IVF? You had your own type of IF, and lived in your own personal hell, and your voice most definitely needs to be heard as well!

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  9. I think it’s great that you are participating and I am sure many will benefit from your voice. It’s incredibly selfless to put yourself out there for questions and open yourself up emotionally all to help other people. That speaks volumes to your character! Please keep us posted on the experience.

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