The Stigma of Chronic Pain: Having Kids

“I wouldn’t have kids if there was any chance they could inherit a chronic pain disorder from me. It’d be unfair to them.” 

I’ve heard this statement–and variations of it–many times since I gave birth to my kids. More often than not, the speakers are able-bodied. Sometimes though, another person with a chronic pain disorder will be the one behind the words.

Every time, those words hurt.

I can’t help but feel that they are judging me for having children, especially when they find out that both of mine inherited MHE.

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I used to think the same way. I didn’t think having kids or even being in an intimate relationship was in the cards for me. After all, I’m disabled. Society doesn’t exactly embrace people with disabilities, and it’s not like there were many books or movies with disabled characters falling in love and having kids.

Obviously, I didn’t want my kids to inherit my hereditary disorder–who wants that? But when I found myself unexpectedly pregnant at 19, I couldn’t fathom the idea of aborting just because my baby might inherit my disorder, and I knew that even if he had it, it wouldn’t make his life any less valuable.

I was optimistic, praying daily, that both my children wouldn’t inherit MHE. That wasn’t the case, and they both have it, but they are so much more than their diagnosis, than their pain and any future struggles they may have because of this disorder.

They are beautiful, incredible little boys, and I cannot imagine my life without them. They give me a purpose, and they help me be the best version of myself I can be. I don’t want them to see me moping about my life’s circumstances, I want them to see me embrace life. I chase my dreams, I do the things that I want to even if it hurts or exhausts me because I don’t want to miss out, and I don’t want them to miss out either. If they have dreams, I want them to chase them…so I chase mine.

I think if I didn’t have these beautiful boys, I would be more likely to let the hard days and the bad things beat me down.

Do I have guilt over it? To a degree…yes. Nobody wants to see their children in pain. But I also wholeheartedly reject the notion that people with chronic pain disorders can’t do something just because they have a chronic pain disorder. 

Parenting is hard across the board, and there are zero guarantees that you will have a healthy child, even if you have no genetic illnesses. There’s also no guarantees that you won’t develop a chronic illness later in your life, when you’re already a parent.

Having children is a personal choice, and it’s always been a personal choice, whether you deal with chronic pain illnesses or not. If having children isn’t something you dream about, by all means–don’t have them. But if someone else living with chronic pain decides that they won’t let that hold them back from being a mother or father, power to them.

You might not think you can handle something, but that changes when you’re faced with it. When I was sixteen, I didn’t believe I could be a mother. I didn’t think I had the energy or the strength to raise kids and battle my chronic pain symptoms, but guess what? I do, and I can. Some days are harder than others, but every day is worth it.

It’s my greatest hope that people–spoonies and able-bodied alike–stop saying crap like that. Stop feeding the stigma.

3 Comments

  1. Johnny U

    Hi JC
    I also have mhe and I don’t have children. My opinion is there is no right or wrong if you want children. It’s your personal choice. And yea people can say stupid things

    Reply
  2. Nikki

    I relate to this 100%, I have MHE as well, I was “officially” diagnosed after I had my son, we all had suspicion I had so I had to make sure. I had x-rays done that showed that I indeed inherited the family disease. In order to get my son tested, I had to go through genetic testing which meant I had to talk to a geneticist and a counsler. While talking to the geneticist (who just learned of mhe before my visit), I went over my family history. My dad and 2 of his brothers had mhe, my younger Uncle had been crippled by Chondrosarcoma (upon hearing that she says “you know that’s rare right?” duh!) Finally she consents to the tests “In case I might want to have more children” – why wouldn’t I want more children? Why shouldn’t I have more children? Are people who have diseases not allowed to have kids? Grr!
    Luckily my son, and in a few years, my daughter both tested negative. I felt like I had won the genetic lottery and got what I wanted – boy+girl=no mhe passed on.

    My dad’s mother did struggle with this especially watching my uncle suffer through his cancer, she sometimes says that if she had known, she would of never had children. I just tell her that I’m glad she did, I’m happy to be here even if I have mhe.

    Reply
    1. Nikki

      My dad and uncles HAVE mhe not Had, they are still alive and haven’t been cured yet lol.

      Reply

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