Warning: this is maybe going to come off as a rant. I had an encounter with someone (who I perceive to have a horribly negative view of herself and the rest of the autoimmune community) about having children.
Needless to say, I left the support group this person was posting in.
This person posted a question (if by question, you mean opinion phrased as a question) about how she didn’t understand how anyone with this disease and on these medications could even consider getting pregnant. She went on to say that we have no real evidence on how these medications affect fetuses…
And on top of all that, since RA is maybe genetic, how could we consider passing along those genes?
No, I’m not kidding.
Yes, I almost punched a panda in the face.
My panda is sad.
So, after reliving the bits of my childhood spent debating on whether or not I should have children, I casually commented that people stop their medications (DUH) when they’re looking to become pregnant, that they work with their doctors, and that the parents I know who deal with medical issues work together as a team – just like any ‘normal’ couple does – to raise their children.
I also mentioned that the post had offended me and that it really hurt me to think about people coming to that page for advice and help on a bad day to see a post essentially talking about us being horrible parents and worthless. At least, that’s how I felt after I read it. And from the wonderful parents I know with RA and other related diseases, that’s just horse crap.
Apparently, that was a very bad idea to share my thoughts.
A few comments later, I left the group. But not until I mentioned how I was glad that the children I know with these kinds of diseases aren’t a part of this group, and how glad I was that these children weren’t a part of the group and hopefully wouldn’t be able to see what had been said. After all, if it made me feel horrible about myself, what would they think?
Her response? Maybe they would learn something from reading it.
What?!
Children. Wait, no. ESPECIALLY children who deal with an illness full of so much pain and so much suffering should NOT EVER have to consider the the fact that they “should not” procreate because of how horrible their disease is, how incompetent they will be as parents, how their genes have given them no choice but to choose to not have children themselves.
I wish I was able to express how crazy pissed off I am right now. But I just can’t. I just can’t.
Related note: my chest and neck get red when I get mad. Cooooool.
If I have children, it will be because I feel like I can handle children. Yep, that means my disease too, but that is not the only deciding factor. I have good days and I have bad days. But I would expect my partner and I to make this decision together, and to go into it exactly like that – together.
Life is not about feeling like shit because your body does things you can’t control. It’s not about you being unable to do things. If there’s anything I’ve learned from the past 18 years, it’s that life is about finding ways to be happy. And if having a child makes you happy – if the thought of holding someone half you and half your partner – if that does it for you, then you have that baby. You’re going to go through the sacrifices of losing medications for a while and dealing with the physical repercussions afterwards.
You and your family goes through this, not random judgmental pity-party lady. And if that sacrifice doesn’t deter you from having children, you’re going to be one of the best damn parents ever.
And if anyone ever tells you different, you tell them to fuck off and talk to me, maybe not in that order.
That's so horrible. Considering how much more 'planning' you have to go through to have a child when you have RA, I actually think that means the parents really really want that child. There are so many kids born into families where they're not valued or loved. I'm sure any child born to an RA mum is treated as a precious gift.
Wow, what a crazy story! I can't belive that person was so incensitive about this. It's wild because I'm at a point in my life where I'm considering having a baby in the next few years and dealing with my RA at the same time has been on my mind a lot. Obviously I would have to go off certain meds for a certain amount of time, and of course it would be very hard on my body, but women do it every day. I've met a number of women with RA who have perfectly healthy children and it's been so relieving to see how well they've made it through.
I kind of relate to the worry that I might pass on my RA to my child, but doesn't everybody have that worry with any health issue? Would we tell someone who has diabetes to never have children? Crazy.
Can I link to this post? I think it's a really well written article about having children and RA.
Oh and I also get all red and blotchy when I get mad/emotional. Bahaha!
This is exactly what I was thinking! All the pain a woman would go through going off those meds – that child is going to be the most wanted and most loved in my mind.
Right?! It's so crazy. I still can't wrap my mind around this kind of thinking. To be honest, it reminded me of genetic cleansing. Among many others Hitler and the Third Reich murdered were the disabled and those with undesirable genes. We would be beyond dead by now, and that's horrible.
You can totally link to this post! I'm glad that you liked it. I was crazy mad when I wrote it so I'm mostly happy it's coherent and not completely riddled with foul language 😉
I'm reminded of The Masterpiece Society episode of Star Trek:TNG.
From the Star Trek Wiki plot description:
"It is explained to Commander William T. Riker and Counselor Deanna Troi that this is a genetically-engineered society; their ancestors came from Earth to create a perfect society, believing that through controlled procreation they could create people without flaws and those people would build a paradise. They have evolved beyond Humanity. They also explain that they have achieved a fully integrated existence with their environment, thanks also to their master design. They cannot separate themselves from it without irreparably altering who and what they are.
[…]
Meanwhile, as Bates and La Forge work on their multiphasic tractor beam, they find that it would overload some of the power conduits. As they try to come up with a solution, La Forge takes his VISOR off, and she sees his non-functioning eyes. He bitterly observes that he probably wouldn't be here, were he born on their world. When she asks about how it works, he explains it to her and suddenly has an idea as how to solve the problem: he suggests using the same technology that his VISOR utilizes. He chuckles, saying that it would be an irony if the answer to all of this is in a device created for a blind man who never would have existed in their society."