For those of us with an autoimmune disease (20% of Americans) or some other chronic condition, it’s easy to feel like people just don’t get it, and usually, it’s because they don’t. You can’t ever fully understand what it’s truly like to live with chronic health issues, unless you have one yourself. It’s impossible, because it goes so much deeper than the symptoms you read on WebMD, and truly effects your mental health and outlook on the world. We can’t expect other’s to understand it, but we can educate when they ask. So here are the top 4 things that people with an a chronic illness struggle with, that usually go undetected by those looking in from the outside.
#1: Traveling Can Be Really Stressful
From the hundreds of pills to pack for each day, to the medications that must be refrigerated, to fear of unfamiliar food, to the actual act of sitting on a plane or in a car that often causes symptoms and flares; traveling can sometimes feel like it’s not worth it. I’m physically extremely high maintenance, but my heart and soul are not. I love adventure, and am totally the person to jump on a spur of the moment trip to a backpacking trip in the mountains for a weekend, but this is a way that my health complicates things a little.
Anywhere I go has to be extensively researched for the amenities I require, and I normally have to call and speak to food services, research allergy reviews, and put in special requests to resorts. I have to stand up for what I need, and sometimes ask questions multiple times to multiple people to assure accuracy.
Traveling with a group also adds a whole new level of stress. Will my issues slow people down or change their plans? Will I have to separate from the group in order to find somewhere to eat that accommodates my diet? What if I’m feeling bad one day, and just need some time to rest in the room? And splitting a room with people I’m not super tight with is kind of the worst thing ever. I need a space where I can feel relaxed being sick. Sometimes I need the bathroom for 30 minutes at a time 5x in a day, and it gets awkward pretty fast sharing a space with people that aren’t your closest relationships. Just being real. These are all things that go through my head, and make group vacations way less fun, unless it’s filled with people that have the same or similar life experiences.
And without a support system, this all becomes 10x more stressful. I refuse to travel without at least one of the people in my life that know my needs, support me, and help me navigate complicated situations. It makes me feel safe, and it’s such an incredible feeling to know that I have that one person there that is more than willing to alter plans, seek out compliant food, or chill in the room if I feel bad that day. FIND YOUR PEOPLE!
So to those who are healthy and don’t face these struggles, don’t get offended when we turn down trips. It’s not you, it’s truly us. But if you do want us on a trip with you, let us know that we aren’t an inconvenience, and be okay with a modified trip. Because there’s a good chance it will be modified.
P.S. this is one of the reasons I’m obsessed with Disney World. They are all about accommodations, and have top of the line chefs that truly know food, allergies, and are eager to adhere to any diet.
#2: A New Symptom Can Put Us In A Really Bad Head Space
Positivity, positivity, positivity…YES!..it is extremely important and can do wonders for how you view a situation, but it’s not a cure all. At times, I’ll do amazing for months, forget I even have Crohn’s and I feel better than I even remember you can feel as a human, and then I’ll get a random symptom. Maybe an abscess will pop up, I’ll begin having joint pain, I’ll get bad acne again, or I’ll start having severe stomach pain. Whatever it may be, going from feeling great (or maybe already feeling bad and even more symptoms popping up), to even a single negative symptom can put me in a downward spiral. What did I eat that I shouldn’t have? Am I not getting enough rest? Did I workout too hard? Is it because I missed this one supplement 3 weeks ago? The thoughts, confusion, and blame start pouring in, and it’s such a disappointment to feel your health beginning to slip away when it’s so out of your control.
This just amplifies every other stress I have going on in my life, and before I know it, I’m in a bad mood, taking out my stress on the people I love the most, and just feeling down. My normally happy, upbeat, positive personality doesn’t even seem like an option, and I become overwhelmingly aware that I have a chronic illness, and actually feel like I AM Crohn’s disease. But I’m not. And this too will pass, just like everything else eventually passes. I know this logically, but in the moment, it can be really hard to convince myself of this.
So yes, there are days or weeks that I’m not who I want to be, and I don’t feel like myself. As someone who has great health, I don’t expect you to understand this feeling, and I hope you never do. But I do hope that you can sympathize with those in your life who do face these struggles, and just show them unconditional love. This means the world to us.
#3: Foggy Brain is LEGIT!
Foggy brain can and does happen to people that don’t have a chronic illness, and can be caused by so many different things. But for those of us with chronic illnesses, this is often amplified, and can be a much more regular occurrence. There are days I am well-spoken, have crystal clear thoughts, and can hold great conversation (I competed in pageants in my teenage years, and always got top scores on interview before I had IBD). There have been other days where I forget how old I am (no exaggeration) and seem super socially awkward. I spent 3 days studying for an exam that my peers would take 2 hours to prepare for in college, so insanely frustrated that I couldn’t get a single simple sentence to stick in my brain, and easy concepts that make total sense now (being in a pretty good remission) seemed like they were in a foreign tongue at the time. So, I get it. I understand what it feels like to be so angry at yourself for not being able to hold a conversation, or feeling dumb after an exam where you couldn’t draw up one answer after a week of studying. I’ve been there, I made it through, but it was terrible.
All of this to say, I think it’s all of our responsibilities to uplift each other, and remind one another of how amazing we truly are. Affirm each other in our strengths, and remind each other how wildly capable we are. Sometimes, we have our off days, weeks, or years, and it ALWAYS roots far deeper than most people think, or see. Find your roots!
#4: We Don’t Mind Answering Your Questions
Maybe I’m speaking for myself on this, but I love when people are curious about Crohn’s, IBD, and my healing diet! There are so many misconceptions out there from people who don’t understand Crohn’s to be anything more than a disease that makes you shat a lot, but there’s so so much more to it, and each individual experiences it differently. I love to clear up those misconceptions, expand upon the different aspects of Crohn’s, and better explain the science behind why diet really is life changing for a disease like this. I would much rather answer questions all day, than people go around misinformed and confused. Ask me anything!
Those are the top 4 things I would like people without a chronic disease to know, but I would love to know what you would like to share with others! Leave them in the comments, or head on over to my Instagram and let me know there!