"But you don't look sick..." and other things not to say to chronically ill people

Disclaimer: I know that people mean well. I do. The purpose of this blog is to take variations of the things people have said and laugh about it.

People have said some really interesting things since I revealed my illness. Some people have been extremely helpful and nothing but sincere. Others, have said some things that will go down in the books. So to the person who keeps asking non-pregnant people when they're due, please heed my advice. You can thank me later.

1. "But you don't look sick."  Um... thank you? I guess? This comment usually follows "how are you feeling?" or something of that nature. When I mention that I feel like poop, and they look at me with the puzzled look...like they don't believe me? Hmm. I wasn't aware you could see my intestines.
2. "Oh my gosh.... my best friend's neighbor's grandma's dog has Crohn's!" Like all of the sudden we are supposed to brush each other's hair and talk about the similarities between myself and your best friend's neighbor's grandma's dog. Unless it is someone you are really close to, let's stick to small talk. I would much rather talk about real estate than talk about Crohn's like it's some kind of door prize.
3. "I heard about this book that cures Crohn's if you eat ___, ___, and ___" First of all, there is not a cure for Crohn's... yet. I wish I could tell you that the only thing I've kept down in the last four days is Sprite and about 8 sticks of saltines.
4. "If you could just exercise a little bit more then I bet you'd feel much better!"
   
5. Anything about weight. Please see my previous post about the joys of Prednisone.
6. "Why are you so tired?" I wish I knew the answer to that question. Anyone struggling with anything autoimmune is carrying around a different breed of "tired." It's the kind of tired that a nap doesn't fix and keeps you up at night. Especially because autoimmune can affect literally any part of your body. It gets very exhausting. It takes the peace away from you. You suddenly can't take a little ache or pain lightly. You become best friends with your doctors and bowel movements pass as good conversation.
7. "At least its not _____." There was a time during my medical journey that my doctor told me I either had Crohn's or Lymphoma. I obviously didn't want either of them, but when I got the biopsies back confirming Crohn's as opposed to cancer, I found everyone was saying "Well, at least its not cancer!" I did not want cancer, by any means, but I didn't exactly think Crohn's was a win. Yes, everything could be worse. But you wouldn't go up to someone who's mom died and say "well at least both your parents didn't die!" 
8. "It will all get better." I really struggle with this one because it always comes from the most sincere. (My Mom) And in my heart, I know it will get better. But sometimes, I don't want to think about what WILL happen, I want to think about right now. And in a pity party, whiny, kind of way, I need to think about the pain and yuckiness going on, so I can get to the BETTER. Because trust me, I want things to be better.

 

By now you may be wondering what to say to someone that is sick. Well, the greatest thing you can do, is to listen. We may need to vent or we may need to change the subject. 

BUT Always point us back to Jesus. Recently, my best friend Dawn and I ran into McDonalds to use the restroom. While we were waiting, a lady overheard us talk about Dawn being pregnant. She said her congrats and immediately closed her eyes and started to pray. It was short, but she prayed for "a healthy mama and a healthy baby, protections, and thanked Him." We were so grateful. She proceeded to tell Dawn how great she looked. It was so sweet. When people are struggling, they need to be pointed back to Jesus. Even if it's as simple as "We're praying for you." In our hearts, we know God is in control, but sometimes those reminders come at the best time. 

Honestly, I don't even know what to say half the time. I have good days and bad days... strong days and weak days.  That's when I just have to cling to #8 and remember that things will get better. Eventually.

 

Love,

The Not So Joyful Joy

 

But I'm trying

PS. I think all businesses should HAVE to have a public restroom. And we shouldn't have to buy a pack of Juicy Fruit to use it. That is all. 

 

Oh Prednisone, how I loathe thee

Dear Prednisone,

I wish I could say "it's been fun," well, actually no I don't. Truth is, I had no idea what I was getting into when my lovely doctor so nonchalantly started listing out my treatment plan for my "rapidly progressing severe Crohn's." It was like he tried to throw "six weeks of steroids" in the middle so I wouldn't notice. My eye brows raised as I made him clarify exactly what he meant. Little did I know that said six weeks would turn into 14 weeks and we would become lifelong friends. I have a few questions for you though. Why do you have to taste soooo bad? As if your lovely side effects weren't enough, why do I have to gag every night. However, I would gag every night for the rest of my life if I didn't have to take you ever again. Along with the nice 40 pounds you have so graciously given me, I now have enough stretch marks to cause a large earthquake in southern California, enough acne for three eighth grade boys. My hair is thin, my neck is thick, and my face is officially a full moon. But I digress. I wish I hadn't taken for granted my size 4 jeans and the days I was swallowed in a medium t-shirt. I wish I could say that this experience has made me stronger, but I'm not quite there yet. It's quite the opposite actually. I've been reminded that I am weak and that I need a Healer. I've been forced to slow down and focus. It has not been fun nor easy and for that you, prednisone, are partly to blame. I used to make fat jokes about the time my older brother had to go on prednisone, but now I get through my days making those jokes about myself. You've literally sucked the energy right out of me. I thought that two weeks ago when I finally took the last half of my extremely low dose taper, I could cap that pill case for a long time. But I spoke too soon. Just yesterday, my doctor decided to put me on a long term low dose. I still can't really wrap my head around long term because quite frankly, I'm still not over the last time you ruined my life, but hey.. I'm always up for an adventure. I missed you terribly. Note the sarcasm.

Love,
I mean hate,
The Not So Joyful Joy....
But I'm trying