Listening to the Right Voices

21 Sep

My brother has Crohn’s Disease, a typically genetic auto-immune disorder that affects the intestines and digestion. It can cause severe cramping, diarrhea, weight loss, and other terrible symptoms. He’ll have it every day for the rest of his life. Some days, even just the thought of food will keep him in the bathroom for hours. Other days, he can eat a huge plate of nachos covered in jalapeƱo peppers with no problem. On days when he’s having what’s known as a “flair,” days when the symptoms are really bad, he has to take medicine. Flairs can last anywhere from weeks to months, depending on the severity. If he doesn’t take his meds during the flair, he’ll continue to get worse and possibly need surgery on his intestines.

The medicine for Crohn’s Disease is made up of mostly anti-inflammatories, which help his body to heal so he can go back into remission. Most doctors (we’re talking regular practice, not gastrointestinal specialists) and my parents think he should take his medicine everyday, regardless of how great he feels. The problem is that if you take these medicines for too long, their effectiveness can wear off, and the patient has to move up to the next level of treatment, which can include shots and weekly IV treatments.

My mom and step-dad both went to my brother’s doctor’s appointment today, so they could tell the doctor he hasn’t been taking his medicine. They’re hoping he’ll get a scolding from the doctor, go home, and go back to taking his huge pills four times a day, because “that’s what he’s supposed to do.”

My grandmother also has Crohn’s Disease. She’s also supposed to be taking medicine everyday, but she doesn’t always. She’s learned to manage her flairs by watching her diet. It doesn’t always work, but when she feels sick, she takes her pills for a few weeks until the symptoms go away. She’s noticed that my brother has been gaining weight. He seems healthier and happier. In her opinion, he shouldn’t be forced to take medicine if he’s feeling better. She’s been there, and she thinks he should have a vote.

Now, I’m sure most of you are wondering why I took the time to tell you this very personal story. The argument here in my family reminds me of the pro-choice argument. No one has asked my brother what he thinks. Yes, he’s only thirteen, so my parents are still the ones who are in charge, but doesn’t he get to have a say? Can’t he share how he’s feeling?

Neither my mom nor my step-dad has Crohn’s Disease. They’ve looked up the information, had doctors give opinions, but they just don’t get it because they don’t know what it feels like. They haven’t experienced the same stomach cramps that my brother and grandmother have faced. They haven’t had to miss basketball games or parties, or try to make up tests, because of hours in the restroom. They haven’t had to go home early from vacation because of the miles between rest areas. They don’t have to be bombarded with comments from people who don’t understand, like “well, if you just ate more, you’d gain weight!” and “Are you sure that’s not contagious?” They’re making decisions for someone else, when they’ve never been there themselves.

Take this same story, but insert teen pregnancy or pregnancy from rape instead of Crohn’s Disease. Crohn’s Disease is serious, but at least with Crohn’s Disease there’s no worry of bringing another human being into the world. I’m outraged that my parents won’t let my brother think for himself and participate in medical discussions that will affect him for the rest of his life. Doctors, family members, and other “experts” will tell a pregnant woman “what she’s supposed to do,” even if that’s not what she wants, or what she thinks is best for her. They disregard, or don’t let her listen to, the advice from people like my grandmother, who’ve been there AND support the decision of the affected party. Why? Because these people think they’re right and possibly think they’re helping. They scare the affected person with the possible medical atrocities that might happen, or tell them it will affect their chances for heaven/paradise/etc.

That’s why we have to keep being the voice that says, “but what does the woman want?” We have to ask her what she wants, what she needs, what’s best for her. We have to make sure that she has access to stories and advice from people who’ve been in the same situation, so that she can let go of some of the fear and be able to think for herself.

So Clayton, this one’s to you, and to Grandma, who was a teen mom because that’s what she decided was best for her.

3 Responses to “Listening to the Right Voices”

  1. Steph L. September 21, 2010 at 8:48 pm #

    I can relate too well to your story – I have a similar condition (Ulcerative Colitis). Not the exact same thing as Crohn’s but has the same nasty symptoms you described. I got it at a young age (around 11) and went through similar with treatments and medicines that didn’t help. Now luckily its under control without medication even though my doctors would prefer I tried meds. It took me a long time to get the hang of my condition and figure out how to live with it, I couldn’t imagine my family pestering me on that level.

  2. Not Guilty September 22, 2010 at 9:33 am #

    I guess the best thing you can do is support him in standing up for himself. I honestly believe it is everybody’s responsibility to take control of their own health and medical decisions. My doctor wasn’t keen on doing another surgery on my ankle but I insisted. It’s still early, but I’m seeing improvements. Yes I take his professional advice seriously but at the end of the day, it’s MY life. Luckily for me I am a force to contend with so people don’t often get more than a mere opinion.

  3. Amanda September 22, 2010 at 7:16 pm #

    I guess the reason I found this so frustrating is, like I said in the post, the fact that everyone always thinks THEY’RE right. I mean, what if it was my 16 year old sister instead, and she were pregnant instead of sick? Luckily, she lives with my dad and step-mom, and they would listen and be supportive of what she and whoever else involved would think would be correct.

    (And thankfully, my brother’s doctor isn’t an idiot. She said that as long as he takes the medicine when he feels he needs to, he’s finally up to a healthy weight for his age. Thank goodness for doctors who listen)

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