The text message always begins something like this:
“Hey. I woke up this morning feeling super sick so we can’t hang out today. Can we please rain check? I’m so sorry.”
“Of course, hope you get over your sickies soon.”
And in my head, I’m thinking… NOPE. Not going to happen.
…
Read the book, not the cover. You’ll understand a lot more if you do.
Everyone’s all like, “wake me up when September ends.” And I’m over here like: Well, September has ended and all I really want to do is go back to bed because I haven’t had a decent night of sleep in days no matter how early I try to tuck myself in, while playing lullabies hoping the mellow hums might serenade me to some z’s. I promise it’s not the cold brew or the fact that National Coffee Day made me want to swallow more caffeine than normal just because it was National Coffee Day. Nope. The only reason I’m up at 2am is because my hands have lost a little bit of strength and I can’t seem to hold them in a tight fist. And my body hurts like someone suddenly decided to stab me in the stomach with a knife and twist it around several times, then proceed to hammer a few nails into my heart and leave them there to chill but it’s still beating a million miles a minute. I’m not trying to be metaphorical or profound or whatever. That’s literally how I physically feel at the moment. Everything hurts. But at the same time, I’m not going to make a big deal out of it because it’s kind of a normal thing. No rivers are flowing on the outside right now because my tear ducts are experiencing a slight drought after this whole week and a little piece of last. But I’m sure I probably have some ponds accumulating somewhere internally.
There’s no other way to put this: Talking about illness is straight up awkward.
I didn’t even want to publish this post because I never really enjoy talking about illness. Actually, I hate it a lot. Because it makes me feel like a freak and super weak and insecure, and I have to be extremely vulnerable. And that, for me, is hard sometimes. Plus, I never want to be the one bringing up the subject about how I’m chronically sick and there’s no real treatment to make things all right. Or, that no one knows what’s going on and that I’m basically a case study. Like, how do you really expect people to respond to that? What do you think people are going to do with that information, and how will they even process it? It’s seriously awkward. Like 90s middle school dance awkward where boys gauchely ask girls to slow dance and they’re about six feet apart barely touching rocking left to right on one and three instead of two and four.
Instagram gave me the 411 on Invisible Illness Awareness Week, and I processed it as 911.
I was scrolling through, and reading posts about how this week was Invisible Illness Awareness Week. I had totally forgotten. My immediate deliberation was that I could completely ignore the movements to raise awareness and pretend like it didn’t exist. But I also had another choice and that was to actually say something meaningful about it, and potentially be a practical help to society. Because chances are, there is someone in somebody’s life that struggles with invisible illness and it’s a big deal even if that person tries to downplay it.
Pep talks, reminders, and things to note:
Admitting is not the first step to recovery.
That’s all a lie. Because if you’re dealing with invisible illness, chances are there is no such thing as a full recovery. But, there is such thing as management, and admitting helps you manage. If I’m being honest, I still get weird about it. The end of October marks six-years of being diagnosed with all the things, and what began my little health journey. I remember that it took me a few years to finally admit to having anything wrong with me. I fought, and I fought hard. I couldn’t accept that my body was literally killing itself. I don’t know when it was exactly or what made it all click, but the moment I decided to accept what was happening was the moment my brain decided it was time to be active, taking better steps to allow my body to heal. Truth is: I don’t think I’ll ever get over how strange it will be to tell someone you’re sick “forever,” or that you’re needing to listen to your body so you can’t stay our past midnight. I don’t think it’ll ever be easy having to explain why you’re canceling plans out of the blue, or the fact that you were fine the night before and then suddenly woke up feeling super crappy eight hours later. Sometimes, I still tell people that I just came down with something to avoid hours of explanation. It’s difficult and sometimes draining, but that doesn’t mean that you should live in your illness’s shadows. You are much bigger than your illness, even if you don’t feel it.
Yes, it’s a daily battle.
Invisible illness really screws with you emotionally, mentally, and physically. There’s no other lighter way to put it. Because you’ll wake up one morning and you’ll feel just fine. You’ll step into your normal grind—get up, get dressed, go to the gym, get your workout on, and then maybe twenty minutes into your normal routine you’ll feel dizzy and nauseous and slightly unaware. Your breathing will be wacked because your lungs decide they suddenly want to be inflamed, and body fatigue takes over like mold infestation. It’s unpredictable, to say the least. And its timing is absolutely terrible most days. And then you just spend the rest of the day feeling nothing but unproductive, and if you’re anything like me, that spirals into another world of mind games.
Remember to have a little grace on yourself.
I’m awful at this. Awful. But I am growing in it. It’s okay to not finish everything on your to-do list. It’s okay to take breaks, or naps. Do what your body needs you to do. I get it, because the world screams at you to be at a certain place and reach particular goals. The world demands things from you. People want something, and they want it now. Expectations sometimes own you. You don’t have to please everyone. Running your body down does not make you a better human or add value to the person you already are. Be nice to you, and spend some time to hug yourself a little longer on those days and maybe buy yourself some flowers.
Not everyone will understand; it’s not personal and you just have to let it go.
We were driving in the car late one night and silence overtook. He asked me if I was doing okay, and how my week had been. I began pouring out my heart about how it had been a seriously hard week because of flares and unknowns and the insecurities dealing with sickness. I will never forget how tiny and offended I felt in that moment when all he responded was, “Okay, cool. I’m glad I don’t have to go through that.” I’m sure he wasn’t intentionally trying to be a total jerk, but there is such a thing as saying the wrong line and in that moment, what he said was it.
So yes. High fives and gold stars and mad respect to you who are dealing with chronic or invisible or autoimmune illnesses. I am giving you serious props and fist bumps for getting up in the morning, and grinding to the best of your ability. And on the days that are harder, extra ice cream cones for trucking along because all this is no joke at all.
The invisible illness struggle is a real thing.
To everyone dealing with their own set of things that life has handed to them, remember that you are not alone. There is someone closer than you think who is right there with you. You’ve got this.
8 Comments
Thanks for this today beautiful! I hear you. I’m not so good with the grace towards myself and maybe that is what I need although my brain tells me I need to push harder that grace will kill me. Total confusion sets in as the battle wages on. Xoxoxoxo
More grace! It’s so hard. It’s always more difficult to allow yourself room to move. You are your own worst critique all the time. But, know you’re not alone. Thanks for reading, lady! <3
thanks for writing this. My invisible illness is hypothyroidism. It sucks. It’s hard to explain why I have these random exhausted spells. Hard to give myself permission to rest when I don’t have a virus or something. Hard to be forced to rest when there’s so much I want and need to do.
Anna, thanks for reading! Yes, I hear you girl. We always tend to push ourselves more than we should. I’m totally guilty of this. Finding balance is hard sometimes, but we need to do it as much as we don’t want to because it what’s good for us. Makes you wonder why we put so much into doing rather than resting. So strange.
hello Juliann,
I completely randomly stumbled across your page–from Instagram I think. I found myself on your website and read the first post I saw. thank you. I too suffer fr a chronic uncurable autoimmune disorder, and my invisible illness knocks me down to the ground frequently, and no one quite understands. I hide, fake excuses for cancelations, and practice acceptance to live with what I have. I am a thousand times grateful
for all the amazing good I have in the world, but sometimes I forget to let go of that and just accept feeling sad and
frustrated and be ok with not being ok. thank you for your words.
Hi Carina! Thanks for stopping by and reading. The struggle is so real, and I completely understand how it can feel so lonely sometimes. Keep your head up. Know there are people out there walking alongside you, cheering you on. Keep journeying. You’re a fighter, don’t you forget that! And on the days when it’s really tough… it’s okay to just be. You do you, and you do what you need for you. Love.
Hey! I’m @meganheartscoffee on Instagram. This was so well worded!! I have auto immune stuff and digestive stuff and food intolerance stuff. So. High five. I’ve had good years and horrible years. Mine started after my second child was born. What a roller coaster. And your right- talking about it? Awkward. Trying to explain it when bailing on plans? Awkward. Getting up out of bed in the morning sometimes? Awkward! Haha. Thanks for sharing . Well done. Keep hustling with grace my friend.
Hi Megan! Wow, thank you so much for reading and for the constant love and encouragement on Instagram! Glad you could relate to all these things. It is pretty dang awkward sometimes, but as with all things, life lessons and laughs definitely come out of it because God likes to be sassy like that some days and He likes to entertain. 😉 Plus, makes for good stories! Haha. Health stuff is always a struggle, but hang in there sweet lady! Keep trucking. Much love.