Living with It: Chronic illness



“Chronic illness is a human experience. And what that means is that it’s not this intangible, extreme thing — it’s good, and bad and nuanced.”

Dear Reader,

Here’s how we talk about living with chronic illness:

We don’t.

… In a way. Here’s how we really talk about living with chronic illness: we ignore the chronic illness part of it, or we frame the story with an emotional bias of either a glorified tale of persistence or a depressing tale of suffering, ignoring the living part of it. We talk about chronic illness in extremes, as if every aspect of chronic illness warrants sympathy, sensitivity, and, in the worst cases, pity. We talk about chronic illness like it’s the most important part of people’s lives.

So, I’m wondering where someone like me fits into this conversation, where my chronic illness can be inspirational, frustrating and boring all at once. Someone like me where chronic illness just exists within the bounds of my human experience — because living with chronic illness is also just my life.

I went on a search to find the chronically ill side of the conversation, and here are some stories of living with chronic illness, told by chronically ill people.

The definition of chronic illness, I Googled, is “a health condition or disease that is persistent in its effects or a disease that comes with time.” They also mention that the word “chronic” is used when the illness lasts longer than three months, but I think that may be an arbitrary number, because I’m not sure if I would categorize a four-month-long illness as chronic. To me, chronic illness can be best defined as a lifelong illness, or an illness with an unforeseeable end.

But first, for some context, I’m going to put myself into this article a bit.

I have Type 1 diabetes, which is an autoimmune disease where my pancreas goes, “Gee, I would love to do my job!” and my immune system goes, “No.” It’s a genetically-based illness, which means it can’t be cured by milk or losing weight, and it wasn’t caused by eating too much junk food.

This experience with my own chronic illness has made me become more receptive to how chronic illness exists in the world, and how different people deal with it. My relationship with my diabetes has been fidgety at best: a pump that acts as my artificial pancreas always attached to my hip, a Dexcom sensor that reads my blood sugar like a brick on my arm, endocrinology visits — these are all things that have forced a lot of different emotions out of me in the past few years with a lot of push and pull. I know that not every chronic illness is the same, not even each case of the same chronic illness, but it was interesting for me to see how these similar emotions exist across each experience.

Tony Meng, junior, has chronic eczema, or atopic dermatitis, which is an itchy inflammation of the skin that often causes rashes and dryness. His most affected areas are his face, neck and arms — recently it has also spread to his fingers and knuckles.

Eczema is actually a very common skin condition: according to the National Eczema Association; babies and young children are most susceptible, but tend to grow out of the condition as they grow older. In Meng’s case, he did have it when he was a child, but it came back with more fervor in his teens, and he’s been dealing with it since his middle school years.

“I still haven’t found out why or how I get flare ups,” Meng says.

Addressing the technical impact on his life, Meng states, “It’s almost like I’m always dealing with it, right? You really can’t ignore it; throughout the entire day I’m always itching. When it gets really bad I’ll put on some creams and all those lotions. They’re pretty uncomfortable, to say the least.”

What interested me about Meng’s eczema is that among all the chronic illnesses, he has a very visible one. Unlike Type 1 diabetes, where I can hide the mechanics with relative ease, eczema, especially on the face and neck, is impossible to hide.

“Even the simplest of relationships, like when I’m sitting in class, people are like, always coming up to me [saying], ‘Oh hey, what happened?’” Meng comments. “Instead of what you would normally say, like ‘Hey, how’s your day?’”

“I really don’t care about fashion or anything,” Meng continues. “I’m not trying to be beautiful or the most amazing person in the world. I can’t even meet reasonable standards as to how others would view me. If I were to meet someone new, it’s like, so striking: the first place they look ,it’s like, ‘wow, what happened to your face?’ And that’s just their first impression; you can’t really do anything about it. You can’t hide it.”

I find it really odd to think about chronic illness outwardly. I’ve always thought that chronic illness was, first and foremost, a very personal thing — it’s a condition of your own body. But for Meng, at least, there’s a social element to it, and it’s just another part of living with chronic illness.

“It’s really just an annoyance,” Meng states. “Every single day, and every single minute of dealing with it, it’s really hard to ignore it. At the worst times, it’s almost like burning, all over your face.”

We share a sentiment. The annoying part, not the burning.

People don’t usually think of mental illness in the conversation about chronic illness, but it does tell another story of living with long-term illness. Mental illness is much harder to talk about than physical chronic illness, because the afflicted organ is the brain. It’s going to be more complicated than “it works or it doesn’t.”

Nikhita Dodla, a senior, has chronic, clinical depression. She was officially diagnosed when she was 12, but she’s been feeling the effects of chronic depression since she was nine. Chemical imbalances of the brain run in her family, so it wasn’t an unprecedented diagnosis; also, due to her family medical history, Dodla is not able to take antidepressants, leaving therapy as her only treatment method — but therapy is underrated as treatments for stigmatized chronic illnesses come.

Dodla often refers to her chronic depression as chronic pain, and it soon becomes obvious why she does so. While it’s less of a physical pain, and more of an emotional one, she refers to her chronic depression in terms of energy drains and breakdowns, and this fluctuation between good and bad days is the brunt of her illness.

“The way I cope of having this kind of chronic pain is I try to get as many things done as possible, so I can have something tangible. To say like I did this many things, I had a good day,” Dodla says. “A bad day is just when I feel, like, really hollow, and it doesn’t even feel like I didn’t do anything; it feels like I’m not a person anymore. Because, like, doing simple things, you know, like taking a shower or just going outside and getting the mail …  that feels like a Herculean chore for me because that’s just how much energy I don’t have today.”

Dodla also goes into detail about her breakdowns, where her emotional pains eventually become physical reactions, including trembling and urges to hurt herself. She says she has learned to maintain herself during those times, holding herself very still until the brunt of it goes away. The emotional build up she has experienced results in a physical outburst of pain, and tiredness and discomfort disrupts the flow of her life for an indeterminate amount of time. Then she’s released of it, and back she goes on the road to recovery.

She puts a lot of emphasis on recovery. Rather than painting recovery as this happy-go-lucky process, she turns it right back around — the recovery process, she claims, is a lot harder than the depression. To say that it’s a test of emotional strength is an understatement. So Dodla came up with a unique coping mechanism, and ended up writing a poetry book in the process.

“So I [thought], ‘Okay, I feel a lot of pain, let’s put this into words. And maybe I can sell a couple of them just to get something out of these breakdowns … I would write them during my breakdown, so obviously, not the most articulate stuff. And so when I was revising and editing them, I would look at them like, ‘Hm, there’s a little bit of a narrative here,’” Dodla says. “And then it kept expanding and expanding and expanding until I was like, ‘Oh, I think this is a book.”

“And so the book itself is about depression, but it’s also about recovery, because depression is bad, but recovery is worse. And not a lot of people talk about this, but recovery is one of the worst things in someone’s life, because a lot of the time in recovery, you’re not only dealing with your depression, you’re trudging up [what] triggered it. You’re trudging up a bad memory, so you’re dealing with your depression and you’re poking the bear,” she continues. “A lot of times, people get worse, because that’s the only way you get better.”

Her book is called “slowly the paint chips away,” which is available on Amazon for about $8. It’s a perfect example of the way her illness has shaped her life. Life doesn’t stop with chronic illness, and while it can be said that struggle may be a prevalent aspect of her life, it’s inaccurate to say that that’s all her life is.

“My relationship with [depression] is just: it’s, like, an exasperated fondness ,” she says.

I found this kind of funny; Dodla talks about her illness as if it were a pet.

“Sure, this disease has almost destroyed my life on multiple occasions, but … I wouldn’t be who I am today … There’s a difference between being your illness and dealing with it, I guess, because, since it’s something that’s so chronic, it just feels like a part of you.”

It’s interesting the way Dodla talks about her illness as a part of her while simultaneously removing it from herself. At one point she talked about being very happy while having chronic depression, which seems like an oxymoron and supports the way she talks about her illness well. She says that her stints with her own mortality have given her a different outlook on life, which is more grateful and appreciative. They’re separate extremes, death and happiness, but they’re still very much human. And ultimately human emotions and experiences will encompass all sorts of extremes throughout each person’s life; a diagnosis shouldn’t hold us back from understanding it, or assuming it won’t ever affect us in any way.

While being the illness/incorporating it into your personality versus dealing with it seem like mutually exclusive frames of mind, somehow it suddenly makes sense for them to exist together.

It has the same ring as that age-old question all chronically ill people end up getting asked sometime in their lives: if you had the option to go back in time and not have your illness, would you? For me at least, the answer will always be a resounding yes. But it still spirals an inner debate: one of being absolutely fed up with and angry at having to deal with this annoying thing, and another wondering how your illness has changed you and if you would be the same person without it. I’m hesitant to say that I wouldn’t be the same person — but I also won’t confidently say that I would.

But if I think about it a little more, it has always confused me why “if you had the option to live without your illness, would you?” is a question that is always asked when talking about chronic illness. The fact of the matter is, there is no universal way to deal with chronic illness, and there can’t be an expectation that everybody can accept their illness as part of them, or be grateful for the struggle it put them through. The answer to the question is always framed as this story of persistence, and to those without chronic illness, perhaps that is an inspirational story — but for those with chronic illness, there is no other choice.

Then again, I also can’t say that inspirational chronic illness stories don’t exist. While I do ardently believe what I say in the previous paragraph, I didn’t write this article not expecting self-reflection. My cynical view of chronic illness being a glorified human experience overlooks a simple fact: it is still a human experience. And if I’ve learned anything from writing college apps, any human experience (Costco, for instance) can be glorified.

Ryan Grimes, a freshman, has nephrotic syndrome, a kidney disorder that causes the body to excrete too much protein.

“Since I don’t have enough protein in my body, the fluid in my veins and stuff leaks out into my body and I get swollen … my tissues become filled with liquid,” Grimes explains. “It can be potentially dangerous, and it does harm the kidneys, so obviously I need to take medicine to keep it under control. But since it is chronic, and there’s no cure for it, relapses are frequent and it’s definitely a part of my life.”

Additionally, because the medicine taken for nephrotic syndrome is an immunosuppressant, Grimes is not “allowed” to get sick; otherwise, his kidneys stop functioning. This means he can’t be around a lot of people at one time — including airplanes and possibly even Homecoming, though he still managed to attend this year.

Nephrotic syndrome is interesting because you can talk about it in terms of relapses and remissions, which means the disease is often, unfortunately, compared to cancer — but that is an easy way to understand how the illness works. Relapses happen when the body releases too much protein, which causes the body to swell.

“You’re really tired, and you don’t want to do anything … You don’t really want to be outside because you look like a different person. I look like a ball, kind of. You just know the difference between, ‘Oh, he’s relapsed’ or ‘Oh, he’s not,’” Grimes explains. “But it’s just part of the disease, so I guess I’ve just gotten used to it … And a few days later I’m back to normal.”

Currently, Grimes’ relapses have occurred maybe once a month since he was in the fourth grade. The longest he’s been in remission was nine months — they call it remission because in those times they don’t need to take medication. Usually, when a remission lasts over two years, then it’s said that a person is “cured” of the syndrome, but that’s not always necessarily true. This fluctuation between recovery and relapse obviously takes a toll on the body, but this unbalance also lends itself to be a test of mental strength.

“A big part of it is mental health, because [chronic illness] definitely takes a toll on it,” he says. “Like, imagine if you think you’re getting better and then you had to start right back to where you were when you first got the disease … and start taking high doses of medication again.”

This is often the case for chronic illness: struggling for a balance between dealing with physical issues and maintaining mental health. I assume this is most prevalent when people are first diagnosed with a life change; I know it was forced upon me when I was diagnosed in my middle school years, even though I thought I had taken the change with stride. In my interview with Grimes, he explained his own entanglement with weaning mental health and stressed the importance mental health really has in dealing with chronic illness.

I asked him about how he thought the media portrayed chronic illness, and I was exceptionally surprised to hear his answer.

“I think they make it out to be harder than it actually is to do it. I believe that, honestly. People are strong. People are stronger than they give themselves credit for. And really, all you need is perseverance, and you can get through almost anything,” Grimes explains. “They’re like, ‘Oh, you get this sickness, oh, you’re definitely dead.’ And I don’t really care for that. Because I mean, obviously, I’ve lived through it.”

Amidst my surprise, I asked him if he always had this optimism, but as it often is, optimism is a learned behavior, and not an innate one.

“Actually, [my optimism] really just came in the past year. I actually used to suffer [from] a lot of mental issues because of this disease. I think bipolar [disorder], depression, anxiety … and of course those aspects are still there, but I try and really cover them down now, because that’s not who I want to be. I chose to take a different outlook on the disease. After I kept relapsing, relapsing, relapsing, I was like, ‘You know what? There’s nothing I can really do about it. So I might as well be happy.’ So that really helped me and I think that’s made my year so far, like in high school and stuff, a really good year.”

“When I first got it, every time I’d relapse, I’d be like super upset. I wouldn’t want to take any medicine. I’d be like ‘no, this is it. I’m gonna die. I’m done,’” Grimes recalls. “But as I think I matured as a person, I think that I’ve become more accepting of it. I’m like ‘hey, you know what, this medicine is just helping my kidneys. Like, without this, my kidneys aren’t going to function and I’m going to die.’ So I need this medicine. And like, I’ve relapsed, but I always come back down. It’s never been too much for me to handle.”

“How would you characterize your illness as?” I ask him.

“A strength.”

I don’t know if I can ever believe that about my own illness. All I know is that it’s been part of my life for a significant amount of time, and what that means is I’ve been there for the good and the bad. And I’ve also been there when it’s been really bad. But the portrayal of strength has to do with the perception of chronic illness in the first place. I don’t think it’s fair to expect that people can respond to stories of struggle, especially a struggle they may never face, without pity. I wonder, in particular cases, if mentioning the depth of a struggle is innately over-exaggerating the true impact of it on chronically ill people. When I complain about having to be surrounded by needles and losing sleep in the night because of hypoglycemia, to me it’s just an annoyance — but wide eyes and sincere reassurances tell me it doesn’t ever just sound like an annoyance to anyone else.

I don’t expect chronic illness to suddenly become this completely normal thing. I acknowledge that we’re still talking about chronic illness in terms of awareness — in books, movies, social media —  which means it does compromise the human aspect of illness. I do, however, think that talking in terms of awareness-through the lens of people who experience illness-is much better than glorifying it for an audience prone to pity. But I wonder how it would be taken if chronic illness was portrayed as just another very real, multifaceted human struggle that isn’t a focal point our existence, from the way we talk about it to the way we experience its ups and downs.

It’s one thing to be praised for overcoming a drastic challenge in your life. I think that that sentiment might change when the challenge is present for the rest of it.

Chronic illness is a human experience. And what that means is that it’s not this intangible, extreme thing — it’s good, and bad and nuanced. I want to continue hearing the stories of chronic illness without the dramatics, the euphemisms of our pains or the understatements of our successes. Because if we’re talking about inspirational stories or persistence, I think that’s what communicates strength the best: the honest stories of people living with it.

Emphasis on the live.