Written by: Amanda Phillips
You see a Ferris Wheel. I see crowds, anxiety, and no fast way to get to a bathroom. There is a lot of talk about invisible illnesses regarding chronic conditions such as Crohn's disease. To the outside world, we may look perfectly healthy on the surface—outwardly walking through life like everybody else. But the thing is, though my illness might be "invisible" to some, the effect it has on my everyday life is anything but. I might not wear my disease on my sleeve, but trust me, there are a plethora of ways you can see that, yes, I am chronically sick.
Living with Crohn's disease means I have to be hyper-aware of bathroom locations. Wherever I am going, I make sure to check out the nearest restroom, just in case. Sometimes, it feels like my whole life is brought upon it. I avoid certain places or events when I do not know about their bathroom situation, which is one of those constant plans that's very visible in the way that my illness affects me. It's just something that everybody doesn't think about, but for me, that's a daily thought. That is part of the reason the Urgency Bucket was invented. It is with me for every car ride.
Long car rides, especially, make me extremely apprehensive. What if I have a flare-up of symptoms and can't find a bathroom in time? I know I have my bucket, but I like to live like I don't. Just the thought of this happening and me stuck in traffic going somewhere is enough to give me full-on panic attacks. This is something one has to explain to people who, otherwise, will not understand why one would want to pull over all of a sudden or is generally avoiding driving. My panic is visible, even if the cause isn’t always clear to those around me.
Wherever I go, my medications come along with me. I carry a mini pharmacy in my bag for you never know when a flare-up may strike. From painkillers to anti-inflammatory meds, it is my constant companion. Though people might not always look, if they do, they will find me taking pills throughout the day—a sure-shot sign that I fight some chronic illness. This is why I wanted to create discrete pill holders, so everyone does not have to realize I take meds all day.
My arms have had many blood draws, and my calendar is full of appointments with doctors. It would be for monitoring, as needed, or for medication adjustments; I am in and out of medical facilities constantly. People catch on when I have to leave work early or cancel an event due to the doctor's appointment, and that might be an overt sign of the invisible disease I'm living with.
Hospitalizations just seem to be a part of my life. Due to flare-ups, complications, or debilitating pain, I have spent too much time in hospital beds. Each and every admission has taken its toll on my mind, and though I may walk out looking "fine," the frequency of the hospital visits is one of the clear-cut visible signs that something is not right with me.
Eating out with friends? Well, that's not exactly so easy for me. My diet is restricted, and I have to be very, very careful in what I eat since everything can serve as a trigger for a flare of Crohn's. People do notice when I'm asking a million questions about the menu, trying to plan ahead or ordering something plain and bland. My meal choices are a visible sign of the care I have to take every day to manage my illness. Otherwise, I could be sitting up in bed or a bathroom all night.
If I have ever canceled plans on you, believe me, it is not because I don't want to see you. It is out of the blue that fatigue, pain, and flare-ups hit, and they don't let be as personable. People might think I am flaky or irresponsible, but my reality is I do my best with a life where my body may change the plan of the day in the blink of an eye. I avoid other sick people like the plague. One person's diarrhea, could be the GI bug that flares my Crohn's and sends me to the hospital.
Fatigue: This is one of the most exhausting parts of living with Crohn's. I am always tired, despite how much sleep I get. Maybe it is the low iron or low B12. You can find me yawning, sitting, or even showing my tiredness by lagging in conversations. People say, "You look tired." I always am. It is one of those things that, even though it is invisible, becomes very visible in how I act day-to-day. Have you noticed I am a less active than the average person?
Because of the pain, you may notice I reach for a heating pad. This provides soothing comfort for the pain you can't see. How about the monthly injections? If you happen to catch me on the right day, you will me getting my B12 injection. I assure you, if I was healthy, I would not choose to receive injections or IVs.
Everyone else may be out there looking dressed up and fancy in their nice jeans, sweater, and heels. Meanwhile, if you take notice, you will always find me in comfort clothes. Stretchy leggings even on dress up days. This is because it is more comfortable on my stomach and easier for me to go to the bathroom in an emergency. Even the hair, it is not often you would see me put extra effort into making my hair look nice. Not enough spoons for that.
People often think that chronic illness is invisible, and sometimes it is. In my case, though—even though I may not look "sick" the majority of the time—there are so many ways that I am, in fact, acting sick. From canceling plans to running to the nearest bathroom to clutching my medication bag, if you know where to look, the signs are there. Not having a cast on my arm or limping in my walk, but a reminder in my daily actions of the chronic illness that I fight day in and day out.
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