Hey lovely people! I finally have another post for you. As some of you know, I have several chronic illness, the foremost being Cystic Fibrosis (or CF). If you’d like, you can read the post I wrote, going into more detail about my journey with chronic illness, and how the Lord has been faithful in that (click here).
I’ll be honest, it isn’t my favorite thing in the world to write about chronic illness. It is pretty far outside of my comfort zone, but as they say, the more you do something, the easier it gets! Is that a saying? I think so… It actually probably isn’t, but now I’m just rambling. I am in a rambling mood, so be forewarned. 😉
Anyways, I have learned that having a chronic illness isn’t something to be ashamed of. If you are a fellow spoonie (the spoon theory is a helpful method of explaining the fatigue aspect of chronic illness, you can read about it here), then hear this: your chronic illness isn’t something to be ashamed of. Lift your head high, you are a warrior. You have to deal with a lot more than the average person, and it’s not easy. Never let it be something you hide because of shame. My identity is in Jesus, and that’s the only way that I’m sitting here, writing this post.
I know there have been times when I wanted to understand a friend who was going through struggles better. I’ve been on both sides of the spectrum, and that’s one reason I want to do this post. Maybe this post can help you understand a little bit more.
*Note, these things are my personal opinion, I cannot say that it will be the same for everyone with a chronic illness. Every single person is different.*
That said, let’s get into the post! These are the things I wish my friends\acquaintances\family members knew about my chronic illness.
#1 Questions are more than okay- they are good
I know that you are trying to be polite and thoughtful. Thank you. Really. But…. I don’t mind questions! Actually, I really want you to ask questions. No, I don’t want you to pound me with a ten minute gauntlet of personal questions. No, I don’t want my chronic illness to be all we talk about.
That said, there have been times when I desperately wanted a friend to ask about my health problems. More specifically, why I was doing breathing treatments or taking meds, or going to the neurologist on Friday… The big, vast unknown is almost always more awkward than the upfront facts.
I honestly, don’t mind sharing with you about my treatments, and health issues. Does it terrify me? Yes. Do I like doing it? No, not really. But do I still want to? Yes. Especially when they come up. The reality of life with CF is that there are going to be times when I do treatments around friends, when I take way more pills than the average person ever would, when I have to cancel a call or get together because I have a doctor’s appointment or just don’t feel up to it. My CF is going to make an appearance, some time or another. And its in those times, when questions are especially appreciated. Here’s why. While your mind is full of possible reasons I might have to do treatments\take meds, and as you stand there trying really hard not to look awkward, my mind is full of possibilities of what might be going through your mind. See the cycle?
Also guys, its okay to not always say ‘the right thing’. I know that struggle so, so much. I can’t count the times when my fingers have paused, hovering over the keyboard, a battle raging in me. What should I say? Its both easier and harder in person, you can’t spend five minutes on your answer, but you can give them a hug. And the countless times I cringed and beat myself up about saying the wrong thing. It’s okay if you fumble, it’s okay. I know, you don’t have to worry about that with me. (this is all said with me assuming that you’re reading this because you care, about me or a different friend\family member with a chronic illness- of course be kind, and considerate, and careful.)
All to say, with me personally, ask away!
#2 Always eating…
This is a fun one. One of my very best friends and I talk on the phone quite often and I honestly can’t remember a phone call when one of us wasn’t eating. It has actually become a running joke with us, where my friend will guess what food I’m crunching (she guesses right most of the time too).
I eat more than the average person. It’s all due to a little pesky thing called hypoglycemia. That is basically where my blood sugar gets low, and I need to eat to get it back up again. My pancreas (that’s the organ that produces and regulates insulin and glucose) really doesn’t behave itself like a respectable pancreas should. Therefore, I need to eat more than normal people who do have upright, respectable pancreases. So if I’m always eating, (like I just had dinner an hour ago and now I’m shoveling down a bowl of rice, two prunes, some apple pieces and a sausage… and no, I don’t like prunes.) I’m not going crazy. Well not for that reason at least. And I’m not trying to be rude! I just need a lot more food than normal people.
#3 I’m not avoiding you
If I haven’t responded to your message in two days, haven’t called you back yet, if I keep not making it to things you invite me to, I promise that I’m not avoiding you. The not responding to messages is actually probably due to my forgetful scattered brain, more than my chronic illness… but that’s besides the point, moving on! I’m sorry. I really am so sorry for the times I’ve neglected you. It hurts me bad, to think that I could hurt you. But, there are just times when my body and brain just are not up to anything except curling up on my bed and watching YouTube videos (link to my favorite vlog done by a Christian lady with CF and her husband below ;)). My chronic illness drains my mental energy as well as my physical energy.
Even though I sometimes have to cancel or say no, please don’t stop inviting me to things. Please keep inviting me to get together, to join a video call. It means so much, and there are times when I absolutely can say yes, can come. I love you guys! I need people too.
I want to make every single video call. I want to read all of my fellow young blogger’s amazing blog posts and comment on them all. I want to go on a grand adventure together. But, there are times when I just can’t. But I think that that makes it all the more amazing and meaningful when I do get to do those things.
So thank you so much for inviting me. For taking the time to be my friend. Thank you readers for reading my blog posts, thank you for being patient when I go weeks, months even without posting. Thank you for interacting in the comments. Thank you friends for letting me eat on the phone\video call. Thank you for getting together with me, even if we have to cut our walk short, or not do anything super exerting. Thank you for all the sacrifices that you make to be good friends to me. Thank you for not leaving. Thank you for making me feel comfortable, for making me laugh and feel able to be vulnerable.
Not everyone does that and it means so much. I love you guys.
And I’m adding a bonus #4
“Healthy” people- people without health problems and chronic illness can’t fully understand. It’s impossible. You can come to a point where you certainly understand a lot, you can understand the way your friend\family member’s body works, their quirks, what triggers a flare up, what they need to do when they are having a rough time with their illness. You can understand a lot, but you can’t understand all of it. And that’s okay. I don’t expect you to understand. You don’t need to understand fully. The best thing you can do is understand that you sometimes can’t understand and just be there. That means the world.
Little things mean a lot. I really, really love my grandparents house. I’ll be sitting on the big couch doing my breathing treatments and cousins, aunts, uncles and dogs will be running through (well, its mostly the cousins and the dogs who are running). My cousin’s baseball cap is on my head, Uno dare cards are scattered around the table. A cousin jumps onto the couch and doesn’t even bat an eye. Its the little things that mean the world. Being accepted is so beautiful. This is just a really big thank you to the special people who accept me, flawed, awkward, with an entire baggage cart of medical stuff. Its as simple as nicely yelling at me to go eat when I cautiously apologize for needing to get food.
And, I realize, that not everyone has the friends and family I do. If that’s you, I’m so, so sorry. Like I said before, I wish I could say the perfect thing. I wish I could tell you that I fully understand. But I don’t. I understand in part, I understand a lot, but I don’t understand it all. I may not say the right thing but I’m gonna try. You are beautiful. You are loved. Its not your fault. No, you are not perfect. Yes, you are sinful, broken, you can’t do everything. But you are still loved. You are still beautiful. You can’t do everything, and you are such a warrior for doing what you do. Not everyone sees it, and that’s really, really hard. Sometimes no one sees it. I know. It really hurts to have people not understand. The thoughts running through your mind: If you could feel what I feel for just one minute, then you’d think differently. You wouldn’t be so quick to judge. Hang in there beautiful friend. You aren’t alone. I promise God sees you, and He loves you so much. And we’re here too, others like you, the people with the fumbling words, we may not understand perfectly, but that’s okay. Hang in there.
Woops, this was a bit longer than I intended, cookies to you if you read it all! 😉
The Link to the vlog I mentioned: (10) The Frey Life – YouTube (its amazing)