Inside the Mind of Someone With a Chronic Illness


If we’ve ever had a conversation, I can guarantee when you’ve asked how I’m doing, I’ve said “I’m OK” with a smile on my face. And if you’ve pushed the question, digging for the truth, I’ve dodged the question as if it were a red rubber dodgeball being chucked at my head. I’ll ask you something I know you’re excited about. I’ll ask about the restaurant we’re at, though I’ve been there hundreds of times. I’ll do anything I can to avoid telling the truth, to avoid scaring you with the harsh reality — to avoid telling you everything’s not OK.

How can I begin to share what’s happening in my medical life and in my headspace without scaring you off? I know you love me, but I also know you truly can’t handle the load of mess you’re asking me to pile out. How can I begin to explain the tangled mess brewing and nagging constantly in the back of my mind?

How do I explain the exhaustion? I’m so tired. Not “I need a nap” tired, but the kind of bone aching, feet dragging tired that no amount of sleep can shake.

I’m constantly on my game.

I’m constantly “on.”

I present this front that sugarcoats the truth, powers through the pain and cracks a joke to keep you from worrying too much. I push my limits to mark items off my to-do list. The constant act is exhausting. But God forbid if I don’t get it all done, I’m doomed to beat beat myself up about it.

I tried my hardest to work. I switched to a less stressful job. I worked part time and I continued to work against better judgement. Having to ask for time off, then ultimately having to step down was the hardest thing I’ve ever done.

Now I’m even more reliant on my parents and fiancé. I’m a bump on a log while they work their butts off to not only provide for themselves, but help compensate for what I am no longer bringing in. I depend on them to pay my bills. I can’t even pay for my own car anymore. I can’t even afford a cup of coffee.

Do I cook and clean? To the best of my ability, but I still feel like a burden. I’m ashamed of my inability to financially care for myself. I’m ashamed at 25 years old, I still live with my parents. I’m ashamed my loved ones have to give up their time to sit with me in hospitals until crazy hours after working a full day.

The amount of guilt sitting on my shoulders can be suffocating.

The guilt of having to ask for help, cancel plans, or miss milestones is unbelievable. While I know it’s not true, there are times I feel guilty that I did something to cause all of this. The twinge of guilt gets me every time I hear the sharp twinge to my voice on bad pain days when that person truly didn’t deserve it. The shame and guilt constantly replay in my head in every quiet moment. It gives me an instant recap of all my failings and wrongdoings as I try to sleep. And it brings a flood of rage with it.

I’m angry.

I’m angry I can’t control what is happening to my own body. I’m angry that while a new iPhone comes out every year, we still can’t find a cure. I’m angry the choice between a temporary and permanent ileostomy was taken from me and I’ll have this for the rest of my life. I’m furious there are times I run across such ignorant people and I have to make the choice to be the bigger person.

There’s a frustration with my own body.

Why can’t you get it together?

Why can’t you stop attacking yourself?

When the pain leads to dry heaving which leads to throwing my back out, I have to fight the urge to scream in frustration.

Why can’t I just deal with one thing?

A bad Crohn’s flare can keep me from eating or drinking, leading to a nasty postural orthostatic tachycardia (POTS) flare, requiring me to get something into my system. Once I eat, here comes the stabbing pain and nausea, which then leads to dry heaving and eventually hurting my back. It all snowballs. It’s maddening to know what I want to say, yet fight for words through the brain fog. I know what I want to say, yet here I sit, feeling like a blabbering idiot, trying to finish a simple sentence. Then, add on the growing lists of failed medications and frustrating doctors and nurses.

It is infuriating, as it hits you from all sides.

***

Once I dig past the anger, I find the real problem: fear.

We haven’t found a medication that works yet. What if we don’t find one? I’ve been in a flare for five years. I’ve been on death’s door. I can’t do that again.

I’m afraid of the hopelessness that finds me when I think about all of this.

I cover it with a joke or smile, but it makes my heart stop worrying about the future. Just today, I was hit with teeth-grinding pain and found myself in my usual position — curled up on the floor of the tub, crying for my mom.

I’m 25 years old.

Will it still be like this when I’m 40?

Can I be a “proper” adult like this? Can I be a mom like this? I want nothing more than to have a family with my fiancé. With complications from surgery, I have a severely decreased chance of that ever happening. If I don’t have the chance to enjoy the blessing of children, I’ll be devastated. It feels as if it’ll biggest failure. But if I do end up blessed enough to have a child, will I be well enough to carry it? Will I be well enough to care for it? Will I pass this on to them? I don’t think I could handle seeing them go through this.

These fears nag at me every day. They sit in the shadows, waiting to attack.

When I meet new friends, the worry of how long they will stick around consumes me. How long will it be before they tire of me and my lifestyle? The fear drowns me, swallowing me into a panic attack that feels never ending. It adds to the exhaustion and anger.

These aren’t the only emotions I tackle on a daily basis. Anxiety, doubt, self-consciousness and disappointment all creep in.

It takes superhuman amounts of energy to push through.

I have learned to acknowledge these emotions and set them aside.

While I have my “days,” I make the conscious decision I will not let this drag me down. I want to be the best me, for my friends, for my family, for myself.

To do this, I have to learn to accept chronic illness often brings its own baggage of mental health issues.

It’s a daily fight and sometimes I need a few good men to fight alongside with me. I am blessed with a family that has battled right beside me. I have a small group of friends I can turn to. I can rely on them to hold me steady when I’m being swept away by even the smallest problems. They do their best to help me open up, just like I have to you right now. While they don’t know the extent of it all, they let me know while everything may not be OK, they will walk with me until it is.

 

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