I Just Need Everyone to Know How Scary This Is

I Just Need Everyone to Know How Scary This Is

I cannot tell you the number of times I’ve written and rewritten this intro. As I stare at my screen, I despise each word I write. It’s not good enough, catchy enough, punchy enough, or raw enough. *Backspace until I have a blank screen.* The rhythmic ticking of my cursor is agitating. I am a perfectionist by nature, but that personality trait aside, this article is difficult to write. 

Here I am at 25 years of age, trying to figure out how to write to you about my issues with fertility. 

After a lot of this same song and dance, I realized for once it wasn’t the written words I hated. It’s the situation I’m in that can brew intense feelings of bitterness, frustration, and… yes, sometimes even hatred for my body. 

Before you say that I am young or I have my entire life in front of me, I am not trying to start a family yet. There’s no shame in those who want to have kids at an early age, but it’s not on my radar at this time. 

My struggles with fertility loom in the realm of uncertainty, which feels challenging in its own unique way. Because conceptually, I am infertile. Though I do not know for certain, as I’ve never actively tried to become pregnant, I’ve had a line of doctors reinforce this narrative about my body.

After all, I was just a kid when I was told having children would be difficult.

Doubt was first introduced when I was 18. My freshman year of college, I was in a car accident that resulted in a number of facial reconstructive surgeries. I should’ve died upon the impact, and I am every ounce of a medical marvel. I spent almost as much time in a medical office as I did in a college classroom. Around that time, my body’s pending issues with fertility came to my attention. I’ve had a lot of trauma and sometimes it just doesn’t happen for people who have experienced that level of a physical blow.

Fast forward several years, I was diagnosed with multiple autoimmune diseases. My disease itself doesn’t inhibit my ability to get pregnant, but it will make staying pregnant challenging. Statistically, 50% of pregnancies with my disease will have complications. 

The thing with autoimmune diseases is that the diagnosis is only the beginning. Through a series of extensive tests, I learned my joints were beginning to distort due to arthritis. Once the damage sets in, it’s not reversible. Because of that, along with other intense symptoms, I was strongly advised to go on the drug methotrexate. 

It’s important to note my rheumatologist tried a string of other drugs and combinations to prevent me from going on this medication. She hates to put young females on the drug, but after that series of tests, the option wasn’t really there anymore. I could opt for constant pain, permanent joint damage, and loss of limb mobility… but is that really a choice?

If you type in the first few letters of methotrexate into a Google search, I think you can understand where I am going with this:

Image of Google search results for Methotrexate.
As for the last search result listed? Typically, a single injection of methotrexate is needed to terminate an ectopic pregnancy. For reference, I take 6 pills a week. 

Though the possibility of the medicine had been looming over my head for some time, I never could’ve prepared for my reaction that followed. I am a seasoned vet in getting medical results back. Doctors compliment me on my calm demeanor, groundedness, and happy-go-lucky nature. I tend to receive it and move on.  But this? This was one of my more out-of-body experiences. You know when you can hear the person speaking, but you can’t at the same time? 

My ears rang, my stomach flopped, my vision blurred, and I went numb. It’s my defense to shut down and shut off. And that’s what I did. I numbed out every emotion because deep down, I knew I’d crumble if I chose to tune in. In the days and weeks to come, I was a mess. And eventually, like all suppressed emotions, I cracked. But why was I so upset? In all the things I’ve gone through, why did this feel so different?

In doing some soul searching, I’ve boiled my struggles with fertility down to the following: 

This part of my illness affects someone else. 

Why is this potential reality any different than my other pending side effects?  

What was hardest for me is the knowledge that one day, I have to sit across from my partner and tell him of the choice I made. To me, it felt selfish to have chosen the possibility of a pain-free life, knowing that this would impact another person. 

I’m on a different medication that can potentially cause blindness, among a multitude of other side effects. I actively choose not to dwell on those possibilities, as frankly, fearing a negative outcome only causes me to suffer more. Am I perfect with that? No. There are days that doubt creeps in, but I would like to think I am pretty badass at keeping those anxieties at bay. But this? It hits differently. 

Should I have waited to go on this medication until after I found a life partner, and then we could decide together? I know you’re probably thinking it is a warped idea that someone else should make a huge medical choice with or for me. I hear you on that, but until you’ve made the same decision, I ask for a little grace in your judgment. Guilt is a dominant emotion when it comes to both sickness and infertility, regardless if it makes sense to others. 

We’ve been fed the damaging narrative that reproduction is linked to worth and self-image.

Self-image and confidence are something I’ve struggled with since my surgeries began at 18. I don’t have words to communicate how awkward and strange it feels to be in a body that doesn’t feel fully yours. My face is held up by a blend of cadaver bone, grafted bone from other parts of my body, and pig bone. I have physical differences that I’ve worked super hard to come to grips with, as there were times I wondered if I would ever be remotely attractive again. There was a stretch where things looked pretty grim. I couldn’t handle looking in a mirror or any reflective surface. 

Through a lot of counseling, I’m much more confident with my face and smile. I’d like to think you wouldn’t know if I never told you, and I don’t just mean by my physical appearance. More importantly, I hope my progress is found in the way I carry myself. But the fertility thing? I still struggle with my self-image and worth in that capacity, though it’s a work in progress. I battle feeling like my body has failed myself and others around me, and I am continually working to have peace over my decision. 

Society isn’t built to “get it” when it comes to infertility.

I cringe every time I hear someone ask a married couple, “So when are you going to have children?”. Frankly, it’s none of your damn business. 

Without thought or consideration, people follow the formula that life equals marriage and then kids. Anything outside of that is considered abnormal. As a whole, we don’t do well with outliers. 

What I Want Women Like Me to Know 

To the folks in a similar situation, I’m not sure what this all means for you or for me. I wish I could hug you. I wish I could tell you that your fears are valid, and even more so, I wish I could look you in the eye to tell you how brave you are. If this piece does one thing, I hope you feel permission to grieve fertility. 

For those that are stuck in the in-between, I hope you feel comforted in knowing you have shared ground with someone. I am not here to deflect, tell you not to worry yet, or tell you about your ability to adopt. 

What Women Like Me Want You to Know

I’ll never pretend to have a monopoly on the experience associated with infertility. It’s a journey I haven’t yet walked, and I don’t know what my future holds. 

Truth be told, part of me was apprehensive to write this piece. What if I actually can easily sustain a pregnancy? Since I don’t know for certain, does that make my fears invalid? It’s indicative of a constant battle for me, as I am usually straddling the “not sick but not well” line. 

But how do I get you to get this?

For one reason or another, a scene from Freeform’s The Bold Type popped into my head. I will never forget watching the plotline of female infertility play out before my eyes. 

One of the main characters, Jane, is a lot like me… for better and for worse. She’s a writer, incredibly driven to please her editor/boss (Hi, Brittany), fiercely adores her friends, and terrified of failure. She was my favorite from the start.

Jane was diagnosed with a BRCA mutation and decided to get preventive surgery to remove her breasts. I won’t spoil the series because it’s actually so good and I believe everyone must watch. Instead, I will say Jane deals with a lot in coping with the emotions of physical illness, body image, and decisions about fertility in her future. 

In a conversation with her boss, she says some of the most powerful words I’ve heard on tv:

“I know people are trying [to support me], I just don’t think they understand. I don’t need the balloons and ribbons and the marches and the awareness… I just need everyone to know how scary this is.

If someone you love is struggling with the possibility of conceiving, remember that.

We don’t need you to tell us there’s always adoption.

We don’t need you to remind us of the alternative paths to parenthood.

We don’t need you to tell us we have a possibility of conception. 

We don’t need you to scold us that worrying won’t do any good. 

We don’t need you to console us that we are still worthy, loved, beautiful, and desirable.

But what we do need? I think mostly, we just need you to know how scary this is. 

Megan Golliver is the Marketing Specialist at Greetabl.