Living With Chronic Illness

When I started this blog a little over a month ago, it was always my intention to be as honest as possible with all of you about my mental illness and the struggles that have come along with it. I think I’ve done a pretty good job of doing just that so far. What I never expected or realized was how my physical illnesses would bleed into and taint the waters of my now positive outlook on life.

white ceramic mug on table beside black glasses and tissues
Photo by Kelly Sikkema on Unsplash

It finally felt like I had a handle on my mental illness. I was out of the dark tunnel and able to shed some light for others that were trying to make their way through behind me. I felt strong, and I forgot for a moment that my mental illness is an everyday battle, triggered by many different things. Although I can have periods of peace, this is a demon that I will carry with me forever. And unfortunately, I, like many of you, can never stop fighting.

At 20 years old, I was diagnosed with a heart condition. The doctors called it an “accidental finding,” but that didn’t stop it from changing my whole life. I was suddenly thrust into a world of 48-hour heart monitors, EKG’s, medications, and having to follow up with doctors every few months. It was a huge difference from being like everyone else I knew who only saw a doctor when they were feeling sick or for the occasional vaccine. I now had a chronic illness, and it needed to be monitored and treated carefully.

The doctors said I was probably born with this disease, but nobody had ever found it because they’d never had any reason to check my heart before. I was relieved that there was a reason behind my sudden chest tightness and palpitations, but I remember being annoyed more than anything at how this was inflicting on my life. I was a young college kid, and more than anything, I wanted to be like everybody else.

But that’s just the thing… I’m not like everyone else.

The Long Journey

I’ll spare you the long, boring details of the doctors trying to find the perfect combination of medication and lifestyle change that was going to make me appear more like other 20 year olds. The heart palpitations triggered my asthma that I’d had as a kid, and I now needed to carry an inhaler around everywhere with me. I wasn’t allowed to exercise too much, and I needed to limit the stressors in my life to avoid any flare-ups. I was in college. My whole life was stressful! It was exhausting getting used to the changes.

black and white stethoscope on a bed
Photo by Hush Naidoo on Unsplash

As the years went by, I went through periods of rebellion against my illness. I’d cancel a doctor’s appointment and never reschedule, or I’d stop taking my medications for months at a time. I just wanted to feel normal. These periods would inevitably end with me in the ER, hooked up to an IV and being lectured by doctors, nurses, and my mom about how I needed to take care of myself. I knew they were all right, but that didn’t make it any easier.

Over the past 8 years, I’ve seen many doctors, who have diagnosed me with many new illnesses that come with their own laundry lists of medications and changes to my daily life. At one point, I was taking 10 pills a day! On the surface, it looks like I’m some kind of hypochondriac, but I live with chronic pain every day. Most people will never know because they can’t see it.

The Latest

Most recently, I’ve had issues with my stomach. None of my doctors would listen to my concerns regarding my stomach pains. They all just wrote it off as a symptom of my anxiety. My anxiety has caused some stomach issues in the past, but this was different. I know my body better than anyone, and I knew something wasn’t right. I could barely eat, and yet I was gaining weight quicker than I had my whole life. Finally, I found one doctor who listened to my concerns and agreed to send me in for some procedures to figure out what was going on.

The process was long and aggravating, because why not? They got the sign off from my cardiologist to put me under anesthesia, and I finally got my answers. I have diverticulosis–the step before the better known diverticulitis. I also have gall stones. Both of these conditions are rare for someone my age, and my doctor is in no rush to start removing organs before I’ve even hit 30. So instead, I’ve had to completely change my eating habits and give up foods that I love. I have to sleep with a (very uncomfortable) wedge pillow. I’ve had to change a lot of what I consider to be my normal life.

What does this have to do with mental health?

It could be worse. I know that. This disease is manageable, and I’m lucky that I wasn’t given a much worse prognosis. But if I’m honest with you, I tried to think of one word to describe how I feel about the crappy hand that was dealt to me. It’s complex, but the word ANGRY sticks out the most.

I’m angry because I still want the same thing I wanted when I was 20. I just want to be normal. I’ve accepted that taking medication daily is a part of my “normal,” but that doesn’t mean I want to be taking these meds for the rest of my life. I’m also angry because the stress of my physical illnesses triggers my depression. It’s like I’m outside of my body looking in. I want to get up and go on with my life as normal, but I’m angry and sad that this is the only normal I get.

This is a process. I’m still working on it everyday. I chose to share this aspect of my life because I know I’m not the only one. There are so many people out there suffering like me, or even worse than I am. I know that I’m not the only one battling to feel normal. The only things we can do is get up every morning and continue to fight.

We didn’t ask for this life, but we owe it to ourselves to make the most of it. There are days that will be overwhelming or difficult, but we need to be kind to ourselves. It will get easier. Not everyone is going to understand, and that’s okay too. Your feelings are real and valid, but that doesn’t mean we should let them consume us. This tunnel is dark and sometimes scary, but there is a light up ahead, and together, we can reach it.

signature