This being National Infertilty Awareness Week, I thought I would share my thoughts on one of the greatest lessons I learned through my infertility journey: the importance of being your own advocate. Being aware of your treatment plan, educating yourself on it, asking informed questions about what is happening and why, and pushing back on things that you disagree with – this is being your own advocate.

While learning to advocate for yourself if not necessary for all infertility patients (for instance, those who find success on their very first cycle, or those who use a smaller boutique fertility clinic that can provide more personalized attention), I found that most of my infertility friends eventually became experts in personal advocacy if their time in the infertility trenches exceeded one year.

For me personally, the first six months of infertility treatment were ones in which I was definitely a passive bystander to my treatment. I went for appointments when told and I took my prescriptions exactly as instructed. When a nurse called me with results or instructions, I was usually confused and overwhelmed by all of the strange words and measurements that she threw at me. I would take in the information, make sure I understood what to do next, but didn’t bother myself with understanding why I was taking a certain medication, what the doctor was looking for in terms of my body’s response, or how things could be improved or changed.

Oh my, how this changed over time! By the time my very last IVF cycle rolled around, after three years of treatment, three different doctors and eleven different nurses, I was the biggest personal advocate I could possibly be. At my last consult with my doctor, I had a list of three new treatment options that I had researched and my doctor and I extensively discussed the pros and cons of these options together. When I went in for ultrasound scans of my ovaries and uterus, I knew exactly the millimeter of thickness that we were looking for and I wouldn’t leave the room until I had the measurements accurately recorded in my personal notes. And for those very familiar with my story and last cycle, you may recall that I was instructed by my doctor and nurse to cancel the cycle due to poor response. Importantly (and thankfully!), I refused to cancel the cycle and we proceeded to an IVF transfer that resulted in a positive pregnancy result.

ADVERTISEMENT

There are two reasons that I think personal advocacy is so important. The first is that no one can possibly care as much about your treatment quality than you. Sure, doctors and nurses want the very best for you, but let’s be really honest here – they can’t possibly want that squirming baby in your arms as much as you do. You are far more vested in this treatment outcome than they are; this is personal for you in a way that it’s not for them. The second reason is that no one knows your body better than you. I had a hunch that I had a uterine problem months before a doctor would acknowledge it, and I know several other patients who likewise had a gut feeling about their bodies and ended up being correct.

Now, it’s pretty easy to advise someone to advocate for themselves. But how do you actually successfully go about this? Here are my top tips:

First, embrace research. Yes, your doctor may roll his eyes about the diagnosis that you found on WebMD or a random blog or a competing clinic’s website, but I say, who cares!? If such ideas prompt a strong and relevant discussion that may lead to an important problem being solved, it’s well worth it. Ultimately, a good doctor will respect a patient who has educated herself on the treatment options available to her and should have no problem debating the merits of different protocols and opinions.

Second, be strong and be confident. This is a really hard one, or at least it was for me. When I get in front of a doctor or nurse, I tend to freeze up. I find my head nodding along inadvertently even when I know that I disagree with something being said. The best way for me to get around this hurdle is to have written notes with me for a consultation. I honestly still find myself doing a lot of head nodding when talking to doctors, but I’ve progressed to the point where it is combined with educated questions and pushback when necessary.

Third, be polite and respectful. Even though I sometimes disagreed with a protocol or diagnosis that a doctor gave me during infertility treatment, I never forgot that he was far more experienced and educated on these issues than I was. With that being the case, I tried hard not to be pushy and self-righteous and instead always listened respectfully even when I didn’t necessarily like what I was being told.

Fourth, know your rights. Toward the end of my treatment, I never hesitated to get my medical information from nurses and technicians. After a discussion or a check-up where a lot of numbers or statistics were thrown at me, I would ask for a print-out of the information or I would verify numbers as I wrote them down. Every once in a while, I would stumble across a nurse who would give me attitude or treat me like a nuisance for asking for all of these details. Frankly, I didn’t let this bother me and the reason is that I knew that I had a right to my own medical information.

Fifth and lastly, keep your eye on the prize. When I felt embarrassed or discounted by a doctor or nurse throughout my personal advocacy efforts, or just downright tired or exhausted, it always helped me to remember why I was doing all of this: for my future baby and my future family. This made the challenge feel more surmountable.

While I learned the skill of personal advocacy through my infertility journey, I think it’s a very useful skill to have in other aspects of life. There will frequently be situations in my life where I have less knowledge and understanding than another person (doctor, teacher, lawyer, boss), where that person is in a position of power and is intimidating to me, and with whom I need to work closely and quickly with to accomplish a task that means more to me than to them. To me, learning self-advocacy is one of those “silver linings” of infertility – I still wish I never had to go through so much pain and grief and suffering to have a baby, but this is one skill that I love having added to my life tool kit!