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I will never forget when the disease made it's first appearance. I was almost seven and, wherever I was, I wound up trapped on the toilet, for hours at times. It was embarrassing, exhausting, and painful. A diary entry from the time reads:
I wish I could sleep all the time because at least in my nightmares I don't have diarrhea.
After that first colonoscopy, the prep of which turned me off of Sprite forever, I was diagnosed with Crohn's. For the next fourteen years, I lived in a state of near constant pain, weakness, and discomfort. When concerned family friends with furrowed brows asked, "How are you feeling?" I replied with a smile and a curt, "I'm fine," knowing they would neither want to hear that bowel movements were coming out of all the wrong holes, nor did I want to admit how it took an enormous effort to leave the house, let alone stand up straight.
Another phrase I've heard a lot over the years is, "You look great!" If they mean that I look beautiful that day, I will welcome the compliment with arms wide open. If they say it to mean I seem healthy, I mumble an unappreciative "thanks" and change the subject. You can always tell how a person means it.
Here's where the misconception lies. Many autoimmune diseases, such as Crohn's, ravage the inside while oftentimes leaving little outward evidence. I am young, I look fit, I'm not in a wheelchair, I'm not losing hair, I'm not disfigured. What you don't see is how I feel like I'm about to fall over in the grocery from weakness; you don't see the pad I wore everyday to school to protect from that poop that never fails to come out too quickly; you don't see how at home I walked permanently hunched over because it hurts too much to stand up straight. You don't see the recto-vaginal fistulas, you don't see the anal strictures. Nor do I want you to, to be honest.
Please don't mistake all of this as complaining. In order to make my point, however, you must know the ugly truths.
This past December, I had the biggest surgery of my life. For eight hours, my abdomen was sliced open: a hernia was repaired, half of my small intestine was removed, and all of my colon along with its attachments (aka my rectum) were taken away and stitched up. My ostomy is now permanent.
The day they removed my epidural, I had some close family friends visit. I got up to use the bathroom, and the drains hanging from my nether regions tore at the skin, my abdomen felt like it was being slashed with a hundred knives, I couldn't breathe, much less walk. I broke down. I cried out in anguish in front of my guests, something I had been able to avoid for so many years of my life. I was embarrassed, and I was mad that my pain was exposed in such a raw way.
The month following my discharge from the hospital was a blur of strong pain meds that could hardly take the edge off, a dangerously quick loss of 25 pounds that left me emaciated and weak, rendering walking and most other normal functions nigh impossible. People asked about me, but were always so optimistic; and for the first time in my life, I was angry that no one understood how terrible it all was. I felt cheated that strangers thought I was just some deadbeat anorexic who had her mother cart her child around for her.
Now, three months later, I've made a lot of progress. I've gained back my weight and I eat a log of mozzarella every other day (a pricey, but fattening habit). I can get out of bed without nearly fainting, and last week I returned to work. I still have a long way to go before I'm 100%, but I'm getting there.
All this to say, just because someone looks good, does not mean they're not battling something awful. I praise God because most days I think I've endured the worst of it, and I'm closer to him because of it. And perhaps if I'm more open about what I've been through, it will be a better witness for how God has worked in my life.
But for those silent sufferers who wish they could use the scooter in the grocery, but know they would be criticized because it doesn't look like they have a problem; for those whose problems are only apparent from blood tests and colonoscopies; for those who are still quietly ailing: I implore you to not assume their pain must not be so bad. I ask you to give grace to those around you, especially strangers, because you truly never know what lies beneath the surface. The next time you see a young person take a handicapped spot and walk out of their car like it's nothing - I beg you to not shake your head and think, There are people with real problems who need that spot. Looks can be deceiving.
And to all my fellow good-looking troopers, never give up hope.
Another phrase I've heard a lot over the years is, "You look great!" If they mean that I look beautiful that day, I will welcome the compliment with arms wide open. If they say it to mean I seem healthy, I mumble an unappreciative "thanks" and change the subject. You can always tell how a person means it.
Here's where the misconception lies. Many autoimmune diseases, such as Crohn's, ravage the inside while oftentimes leaving little outward evidence. I am young, I look fit, I'm not in a wheelchair, I'm not losing hair, I'm not disfigured. What you don't see is how I feel like I'm about to fall over in the grocery from weakness; you don't see the pad I wore everyday to school to protect from that poop that never fails to come out too quickly; you don't see how at home I walked permanently hunched over because it hurts too much to stand up straight. You don't see the recto-vaginal fistulas, you don't see the anal strictures. Nor do I want you to, to be honest.
Please don't mistake all of this as complaining. In order to make my point, however, you must know the ugly truths.
This past December, I had the biggest surgery of my life. For eight hours, my abdomen was sliced open: a hernia was repaired, half of my small intestine was removed, and all of my colon along with its attachments (aka my rectum) were taken away and stitched up. My ostomy is now permanent.
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| Smiling because I am on very heavy drugs |
The month following my discharge from the hospital was a blur of strong pain meds that could hardly take the edge off, a dangerously quick loss of 25 pounds that left me emaciated and weak, rendering walking and most other normal functions nigh impossible. People asked about me, but were always so optimistic; and for the first time in my life, I was angry that no one understood how terrible it all was. I felt cheated that strangers thought I was just some deadbeat anorexic who had her mother cart her child around for her.
Now, three months later, I've made a lot of progress. I've gained back my weight and I eat a log of mozzarella every other day (a pricey, but fattening habit). I can get out of bed without nearly fainting, and last week I returned to work. I still have a long way to go before I'm 100%, but I'm getting there.
All this to say, just because someone looks good, does not mean they're not battling something awful. I praise God because most days I think I've endured the worst of it, and I'm closer to him because of it. And perhaps if I'm more open about what I've been through, it will be a better witness for how God has worked in my life.
But for those silent sufferers who wish they could use the scooter in the grocery, but know they would be criticized because it doesn't look like they have a problem; for those whose problems are only apparent from blood tests and colonoscopies; for those who are still quietly ailing: I implore you to not assume their pain must not be so bad. I ask you to give grace to those around you, especially strangers, because you truly never know what lies beneath the surface. The next time you see a young person take a handicapped spot and walk out of their car like it's nothing - I beg you to not shake your head and think, There are people with real problems who need that spot. Looks can be deceiving.
And to all my fellow good-looking troopers, never give up hope.
Bless the LORD, O my soul,
and forget not all his benefits,
who forgives all your iniquity,
who heals all your diseases,
who redeems your life from the pit...
Psalms 103:2-4a
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