What I Really Need You to Understand About Life With Crohn's
Think about the last time you were really sick. When you had a fever or nausea and couldn’t even pull yourself out of bed because you were so weak.
Now think about a time in your life when you were in pain – maybe a sports injury, a really bad headache, or a recovery from surgery.
What if you experienced both that illness and pain at the same time? You would probably take time off work and stay in bed, or at least modify your life for a few days while you recovered, right?
Think of the last hard day you had. Maybe you were reprimanded at work or your kids were particularly difficult or someone close to you betrayed you. Now imagine going through that day all over again… while also sick and in pain. Really think about it.
Imagine that you feel that kind of illness and pain most days, but instead of staying in bed, you have no choice but to go to work, to school, to church, and to family gatherings. And you do this not just for a week or two, but day in and day out for months, and maybe years.
On top of it all, you find that if you talk too much about not feeling well, you’re labelled a complainer. But if you repeatedly back out of plans at the last minute and don’t tell people how sick you are, they assume you’re just a flake and undependable. You feel anxious about how people are perceiving you and this anxiety, mixed with the energy, demands of being in pain and sick all the time, makes you extra sensitive (and if you’re like me, you’re a sensitive person to begin with). You don’t have the energy to filter your thoughts. Sometimes when your friend complains about his long work hours, you just want to scream, “At least you’re healthy!” And sometimes that resentment comes out in half-joking sarcastic comments… You feel bad because his problems matter too. But you also feel kinda justified. After all, you have all of life’s “regular” problems, but you’re sick on top of it.
You feel like people are judging you – for not doing enough, for doing too much, for not doing things the way they would, for sharing too much, for not being real enough, for all the things you do on your good days. And for every text or phone call you don’t answer because your arms are too heavy to pick up the phone on your bad days. Unsolicited advice about diets and procedures abounds. You somehow manage not to snap at people even though it feels like they are blaming you for being sick. If only you did this or that, you would be better. Why aren’t you trying harder to get better?!
You spend a day curled up in a ball on the bathroom floor and someone is upset because you didn’t show up at the school picnic. You take some painkillers and force yourself to go to church on Sunday and someone is upset because you didn’t mingle enough after the service. You feel halfway decent one day so you put on some makeup and go out. You laugh and talk and look pretty normal. It makes everyone wonder if you’re really as sick as you say you are. If you push yourself through the pain to do the things that are really important to you (like take your kids on a family vacation), people expect you to push yourself through the things they think are important too. Things that may or may not be worth the pain to you. Sometimes it feels like you can’t win.
Imagine that one night, you’re up all night with what I like to call “pain-somnia.” You finally give in and take your pain medication around 5 a.m. and fall into a drugged sleep. The next day, you are really groggy and exhausted. On top of it, you’re still in pain, but you have a million errands to run. You feel a bit guilty for sleeping through the morning routine with the kids, but you’re eternally grateful that your husband is so kind and capable. You literally crawl from the bed to the bathroom, take a hot bath, throw on some sweat pants and head out. Every. single. step. you take sends a shooting pain through your entire body, but you manage to get through most of your errands, which include grocery shopping, buying a birthday card for your mother-in-law, and picking up food for the guinea pigs.
You bump into a mom from the kids’ school and she asks if you’d be willing to volunteer in class next week. You want to say yes, but you know you can’t commit to anything. You learned long ago that class trips to the museum and diarrhea do not mix. You question whether you need to explain, but in the end you just say you’re too busy. You can tell she’s not impressed with that, but you’re pretty accustomed to being misunderstood at this point. Her judgment hurts, but you’ve got bigger fish to fry.
Just as you are on the way out of the pet store, it hits. Your stomach is churning. You have to go to the bathroom. Right. Now. You make a beeline for the restroom (of course, you made a note of its location immediately upon entering the store) and get sick. It hurts so much that for 10 or 15 minutes afterwards, you can’t stand up. You just sit there on the edge of the toilet with tears streaming down your face, waiting for the pain to subside enough to walk. An employee comes in and asks if you’re alright and you crack some joke as though the whole thing is just hilarious. She can’t see your tears through the closed stall door.
When you finally get home, you just want to lay down, but your son needs your help to fix his broken helicopter (you promised!) and your daughter is upset about something that happened at school and needs to talk. Dinner needs to be made and the house is a mess from everyday life. You pop a couple more pills and hope that they will help you make it to the end of the day. You snap at the kids more than they deserve. You feel guilty, but promise that you’ll make up for it on your next “good” day. Hours later, you find some relief by soaking your sore body in a hot sitz bath and crawl into bed around 9 p.m. You feel guilty because you realize that your husband took the kids to school in the morning and put them to bed for the third time this week.
Your phone beeps. Jennifer wants to know why you weren’t in class tonight.
It beeps again. Your mom. She misses you and wants to know if she can call tomorrow. That’s sweet. You’ll call her from the car on your way to your doctor’s appointment downtown. You try not to feel anxious about being stuck in the car on the highway for an hour with nowhere to poop if it hits. You make a mental note to make sure you’ve got some toilet paper in your purse in case you have a side-of-the-road emergency.
You close your eyes. The pain is back. You can’t afford to be groggy when you drive tomorrow so you try to sleep without medication. It’s not working. You think some distraction might work so you pull out your laptop and open up Netflix. Right in the middle of an episode of Shameless, your son comes into your room for his 27th hug of the night and, in a sweet, sad, little voice points out that you said you were sick and needed to sleep, but you’re just watching TV. There’s the guilt again. You try to explain, but this 11 year old doesn’t really do the whole empathy thing very well. Eventually, you get frustrated and make him go to bed. You feel like a total failure.
Imagine this is your life. Not just once in a while, but every week. All. the. time.
I’m at a place in my life and in my illness now where I really need the people in my life to understand how sick I am. For the sake of our relationship, I need you to understand that I cannot keep up with the demands of life the way a healthy person can. I have to make choices that “regular” people don’t have to make. If I go to that pool party or family function, I will spend the entire next day recovering, which means I’ll have to give up something else. I can’t do it all. If you place the same expectations on me that you place on a healthy person, you will be disappointed. And I’m afraid you will come to resent me.
So friends, classmates, family… I’m not asking for practical help (not today anyway). I’m not asking you to bring us meals, watch our kids or hire a house cleaner (although I won’t say no to any of that if you offer!). What I really need from you at this point is your understanding and grace. I need you to lower your expectations. I have kids and a job and I know it’s hard to understand because of everything I do and because I look “normal” on the outside, but the truth is, I am not like everyone else. I am sick. Please, please… go easy on me. And I’ll try to go easy on me too.
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