Is Infertility a Disability? I read that sentence this weekend and in my head, I answered, yes it can be.
My experiences as a disabled person led me to answer yes, but perhaps, those who have no attachment to infertility would feel differently.
When I was 17 years old, I made a choice to shoot for a better quality of life by taking a medication that would put me into medication induced menopause.
I don’t regret the medication choice. I was severely ill from my hormones and period. Its hard to talk about this topic because it has been viewed as taboo, but truthfully, my period was killing me.
Why? I have a condition called Hereditary Angioedema. It’s commonly triggered by hormones in women, as well as any trauma to the body. Additionally, when I was a teen, doctors at the Mayo Clinic suspected that I have a condition called Autoimmune Progesterone Dermatitis, except I didn’t just have a dermatitis issue, I was struck with full blown anaphylactic episodes surrounding my period and changes in hormones.
It was bad. Every month was agony. It wasn’t just a week of agony, but multiple. I couldn’t stop bleeding. It was heavy. It was intense.
I lived between different Emergency Rooms and Intensive Care Units mainly because my hormones were driving my throat to swell shut, rashes to cover my body, swelling that made me fear for my life. I got small breaks from the hell, but when I took the medication to stop my hormones…*poof*
Once the medication started working in my body, I got quality of life back in my life. It isn’t a cure, but I am sure without the medication, I wouldn’t have survived.
That medication improved my quality of life in a lot of ways, but as I’ve grown older, I struggle, at times, with comparing what my life “could’ve been” and what it realistically is. It isn’t the only medical issue I have.
The choice was easy at 17 and it’s a choice I recommit to every 3 months via an injection. When I was 17 years old, people weren’t having babies left and right.
I have to! I have to take the medication, well I guess I don’t have to, but if I don’t, I will be left with symptoms such as my throat, lips, tongue swelling more frequently. I will go back to a life without quality. I will be present at the hospital more than my home, and who knows what else will happen. Did I forget that I am severely anemic without my period? I was untreated for anemia for a long time or given treatments that didn’t work. Anemia plus Dysautonomia…not a good mix. Talk about endless fainting episodes. I’ll deal with crippling pain from suspected endometriosis. I’ll be troubled further in trying to manage. I would be subject to all the other complications that would arise due to also having Postural Orthostatic Tachycardia Syndrome (POTS). Periods/hormones are known to aggravate this condition.
Get the picture? Maybe you do, sometimes I struggle with the picture. Sometimes I have good days and I think I’m invincible. I sometimes forget to be realistic with my life because I just have a deep gravitation to be like everyone else.
What does all of this have to do with fertility?
Well, this medication essentially puts me into menopause, therefore my ability to have children isn’t possible. Although I know it would be very difficult to have children, even if they were foster children, or adopted, I don’t feel as if I can be a mother because of my illness. How can I take care of someone else if I can’t take care of myself? I actually require the help of caretakers. What would I do? Expect them to raise a child too?
Most people infertility doesn’t have this complicated of a situation. My story feels unique because maybe I’d be infertile on my own, but for sure, I am with the medication.
For many who have experienced infertility, although mine is technically a choice to be infertile, even though it really isn’t a choice, the thoughts can be mentally disabling. Some days, I am more okay with the situation than others.
I remember being asked once by my doctor at the Mayo Clinic. I was a kid when he asked me, “what about kids?” and I was shocked he’d even consider asking me that because back then I felt like “HELLO IS ANYONE PAYING ATTENTION? DO YOU NOT KNOW MY HISTORY? HOW CAN YOU SUGGEST THAT I WOULD BE CAPABLE?”
Anyway, at the time, I was furious in my head. I was worried about me, not a potential life of a child. For many, they’d do anything to have a child and many go great lengths with treatments when experiencing infertility.
I know that the best choice for me is to focus on me. It isn’t about bringing a child into this world. It isn’t about attempting to be a parent and pass on the potential of them having my conditions. For me, I have to put myself first and essentially choose to be infertile, but man, for those who don’t get the choice, what a complicated and what I would assume is disabling situation to have to endure.
I don’t think there’s a right or wrong way to answer this question, but is infertility a disability?
