DEALING WITH THE IGNORANCE

 

Generally  with this blog I have tried to make it something positive, something filled with hope and a brighter outlook. However, today’s blog is brought to you by pure anger at the ignorance surrounding infertility. The amount of misinformation out there is astronomical and with today’s post I’m hoping that I can bring a little clarity and a little education on the subject. I’m also hoping that maybe just one person will change their thought process pertaining to infertility not being a true illness.

I’ve been pretty open for the vast majority of our journey. I shared about our miscarriage before we were ever diagnosed as a couple dealing with infertility.  Infertility affects 1 in 6 canadian couples. It’s not rare, it’s not uncommon and it’s not something to be ashamed of or be shamed about. Infertility isn’t just the inability to conceive, it’s also loss. 1 in 4 pregnancies has the capability to result in miscarriage and sometimes this is just due to genetic issues, or it’s due to an underlying cause, such as PCOS, Endometriosis, or other infertility related illnesses. I have never or will never be ashamed of the hand we have been dealt with this process. It has made me grow in to a strong, compassionate, empathetic and brave person. I have looked absolute heartache and despair in the eye and I have risen above. But, I do suppose I am naive to expect the same out of the rest of the population. Infertility is not something you can truly grasp until you’re going through it. It’s like trying to run a race in the ocean, when everyone else is running on solid ground. You in no way have the means to keep up and constantly feel as tho you are being left behind. It’s hard to grasp that unless you’re physically in it. So while I don’t always expect people to understand, I do expect them to be kind. To be compassionate. To not be cruel, just because it doesn’t affect them. I expect the same level of respect as I give out. While I don’t understand what it’s like to be a member of the LGBT community, and I will never understand the pain they face from those who are less than kind, I can be compassionate and acknowledge that their grief is real. Realistically you can insert anything in to that slot and it still makes the same sense. Disability, domestic violence, cancer, racism, religious persecution, etc… Just because I haven’t experienced it first hand doesn’t make it not real or not deserving of my compassion. But often times it feels, to me, and many others sharing my plight, that infertility is seen as less deserving because we’re making the choice to want a family of our own or because it has to do with women’s health or reproductive organs.

Now stick with me here, I’m not saying that my battle with PCOS and infertility is as dire as terminal lung cancer. We all know I’ve seen the lowest of lows of what that disgusting disease can do to the human body, mind and soul. I watched my mother become a shell of who she once was. I don’t believe the cancer was her fault, it was just some shitty luck, but she did smoke for close to 40 years, so we all can agree that definitely didn’t help the situation. Sure when she started smoking at 16 there were no concerns. I mean that was the same era that they said pesticides would have no negative effects on your health. And I also know that the addiction to nicotine that comes with smoking is a hard beast to break. But we know the risks, the potential outcome, yet people still choose to smoke. What I am trying to say is that my illness is real. It’s no less real than cancer, diabetes, depression, the list goes on. However, the second an illness correlates to a female reproductive organ, it immediately makes me lesser. A man with erectile dysfunction, which can just so happen to be a form of infertility, can go to the pharmacy, give his insurance card and fill his prescription for Viagra, and have his insurance cover it. Bing, Bang, Boom, erectile dysfunction all but solved and a baby he can make and no one bats an eye. A woman, who needs IVF to be able to conceive is out thousands of dollars, in most cases, and the second she looks in to getting a grant or tax breaks or asks to have it covered under insurance she is basically lambasted and told that it’s no ones responsibility but her own to create her family.

The reason this blog today is what it is has to do with the fact that yesterday, CBC published a story that those of us who are dealing with infertility can retroactively claim expenses from fertility treatment for up to 10 years prior and would be given a tax break. A TAX BREAK. Not a refund of all costs, not that anyone else would be taxed for our treatments, but that we’d be given a slight break in what we have to pay because our medical, yes, MEDICAL, expenses were higher than a great majority of other Canadians. Now you can just imagine how this was received by certain members of the populous. Those keyboard warriors who hide behind a screen and break down any little bit of positivity allotted to others were out in full savage force. And because clearly this is something that is very sacred and important to me, I got involved. I am open about what we’re going through, like I have said, I am in no way ashamed of it. So my hope was to educate some people on just how heartbreaking this whole process can be. My comment received a good deal of support from other women, who clearly are running the same ocean race I am. It also received a lot of support from people, men and women, who are just kind souls. People who believe that all individuals are deserving of compassion, whether they have walked in my shoes or not. It was, for a moment, truly inspiring. However, like anything on the internet, it didn’t take long for the negative to show. One guy told me that he shouldn’t be obligated to pay extra taxes for me to conceive(clearly he does not know what a tax break is and that it won’t increase his personal taxes), and to get over myself and to not have kids. Someone else made a comment that my infertility was a dysfunction, not a true illness. Another insinuated that my PCOS and my infertility are separate and should be treated separately, but the last time I checked, my PCOS is the CAUSE of my infertility. The same guy who told me to get over myself then threw out the “why don’t you just adopt then” line. This is something that EVERY and I mean EVERY person with infertility and undergoing treatment hears. However, most people have no idea just how hard this actually is. Adopting a child is not like going to the SPCA and getting a cat and a dog, where you leave same day with something in your arms. It can be years, and I mean years. I know people who have been waiting to adopt for upwards of 10 years. It can also be incredibly costly, depending on whether its public, private or foreign adoption. Lawyer fees, travel expenses, not to mention the fact that often times you truly don’t know what to expect, what that child has been through, emotionally or physically. So then people say well just foster and adopt that child. Again, not that simple. The wait lists for adoptions are so high that the chances of you being able to adopt the child you potentially spend years fostering is incredibly slim. They have a better chance of going back to an unfit birth parent than they do staying with their foster family.

I have PCOS. I did not choose for my body to not function the way it is supposed to. My ovaries don’t work the same as a healthy woman’s does. Due to this, my risk of developing uterine cancer is 3x as high as a woman who has a regular, monthly cycle. If I don’t receive medical intervention to force me to ovulate, my uterine lining builds up, causing cells to have the potential to overgrow and become cancerous. As a woman with PCOS, my risk of developing diabetes is higher, due to the fact that PCOS can make a woman insulin resistant. I also have an increased risk of developing heart disease. I did not choose to have any of those risk factors. I don’t smoke, I rarely drink, I try and live a healthy lifestyle, yet because of an ILLNESS, or if you prefer, a disease, as categorized by the WHO, which I did nothing to bring on, not only can I not have children the conventional way, I also have those lovely potential illnesses to look forward to on top of my current PCOS.

Another thing that my illness took from me was the child I was pregnant with before I even knew what I had. That child was 1 in a million, for me to be able to conceive naturally, and PCOS took them from me. I most certainly didn’t ask for that. I still grieve for that child today, for the what ifs, for the life that could have been. PCOS is also likely the cause of why I developed uterine polyps and was forced to have them surgically removed and then suffer through weeks of wondering if they would come back as cancerous. No I certainly didn’t choose that. And I definitely didn’t choose to be more prone to depression/ppd because of my infertility. A study done by Harvard medical has correlated that infertility and unsuccessful treatments are linked.

“But while the causes of infertility are overwhelmingly physiological, the resulting heartache — often exacerbated by the physical and emotional rigors of infertility treatment — may exact a huge psychological toll. One study of 200 couples seen consecutively at a fertility clinic, for example, found that half of the women and 15% of the men said that infertility was the most upsetting experience of their lives. Another study of 488 American women who filled out a standard psychological questionnaire before undergoing a stress reduction program concluded that women with infertility felt as anxious or depressed as those diagnosed with cancer, hypertension, or recovering from a heart attack.” Burns LH. “Psychiatric Aspects of Infertility and Infertility Treatments,” Psychiatric Clinics of North America (Dec. 2007): Vol. 30, No. 4, pp. 689–716. There it is, in writing, black and white. The stress and depression associated with infertility is comparable to that associated with a cancer diagnosis or recovery after a heartache. My illness is real. It is pain. It is anguish. It is despair. And it is tangible. It’s not something I made up in my head, but it is something that affects me every day.

So, to the people, who so cruelly say “just get over it” or “a child is a privilege, not a right” or “if you can’t have children naturally then you aren’t meant to have any”, I truly hope you someday learn the value of empathy. The value of the phrase “if you have nothing nice to say then don’t say anything at all”. Because, personally, I am stronger than your closed minded views, of your complete lack of compassion for something you cannot begin to fathom the anguish of. However, out there there is someone who your words will utterly and completely cause unimaginable harm. Your words could be the thing that sends that woman or man over the edge of despair, which they may not be able to come back from. Being kind take the same amount of effort as being cruel, but only one of those things will be of value and make this world a better place.