The Invisible World of Chronically Sick Teens

Photo+of+Lanie+Allred+Taken+by+Lanie+Allred

Photo of Lanie Allred Taken by Lanie Allred

Ava Hillbrand, Reporter

As any teenager could tell you, the years spent in high school are some of the most challenging- requiring teens to take on more rigorous academics, battle peer pressure, experience physical changes, and navigate complicated social lives, all while trying to decide what lies in their future. These responsibilities and pressures are enough to stress out even the most put-together adults, let alone teenagers additionally burdened with life-altering chronic illnesses. 

 

The word “chronic,” refers to any illness or condition lasting over six months. For most people, being diagnosed with a chronic illness means a lifelong battle full of doctors appointments, treatments, and dealing with worsening or new symptoms and conditions that can be mentally and physically taxing- especially for a teenager.  

 

Though often invisible, chronic illnesses are present in people of all ages, and on a large spectrum of severity. Oftentimes the words “chronic illness,” evoke pictures of someone lying helplessly in a hospital bed or perhaps an elderly grandparent with arthritis. Though these are accurate examples, there are people that deal with invisible illnesses in everyday life that don’t fit this stereotype, including teenagers who appear to be in perfectly good health. Without outward symptoms, teenagers with chronic illnesses can be largely misunderstood by peers. As a result, it makes it difficult for those dealing with illness to be open about their conditions. These teens are often hesitant to share how they are feeling day to day, including how the strain of having a chronic condition affects them mentally and socially.  

 

“[With] ‘an “invisible disease’ you [can] never really tell when someone is sick or in pain…so I do get questions from people like ‘why do you miss so much school?” said an anonymous teenger diagnosed with Juvenile Rheumatoid Arthritis at just eighteen months old. “[They say] you seem fine, or something else along those lines. But it just takes explaining, and most people do understand afterward, but some still don’t get it when the person seems perfectly fine.” 

 

Oftentimes, even when these teens are being social, going out with friends and/or being active, it’s easy to assume they feel fine, but this is often not the case. Katherine Young, a sixteen-year-old high school junior with Type 1 Diabetes said, “It has impacted [my social life] a lot, because…whenever I have really really high blood sugar and I’m out with my friends, I feel bad because I don’t feel good.” 

 

Shantz Nichol, a junior at GSHS, has been chronically ill from a young age, being diagnosed first with Celiac Disease in early elementary school, and more recently Type 1 Diabetes and sleep apnea. Because Nichol’s illnesses are for the most part “invisible,” it can be difficult when even friends are dismissive and doubtful about their existence, or struggle to understand the limitations they inflict. 

“Anything that’s not physical is really hard to discuss,” said Nichol.  “It just makes it harder to go out sometimes. I think I do pretty good and that makes it harder to a certain point.” 

When those with chronic illness do feel well enough to go out and expend energy, others can begin to assume their illnesses aren’t legitimate, as they are invisible, and symptoms can appear inconsistent to those not familiar with the illness.  

“I’m not a conflict person,” Nichol said, “so I honestly just let them believe what they want to believe.”

 

Parker Wilson, a 15-year-old freshman at GSHS, spoke about her experiences as someone with a more visible condition. Wilson talked about the assumptions and misconceptions others can make about her and her condition. 

 

“I have cerebral palsy and my whole life I’ve never been able to walk. I’ve been in a wheelchair since kindergarten or so,” said Wilson. 

 

“There have been people who will assume I can’t do certain things or just assume that because I’m in a wheelchair I’m not as smart- which is in its own way totally unconnected. Or, they’ll be like, “how can you participate in this activity if you’re sitting down?” Or, if I have like a teacher with me, to help me do certain things, they’ll come up to the teacher and they’ll ask about me without even looking at me, or directing the question towards me. So I’ll have to tell them -you know you can ask me personally, you don’t have to go straight to [the teacher]. I’m more than capable of answering your question, whatever it is. I don’t mind answering people’s questions as long as they actually talk to me and are willing to understand.” 

 

These assumptions can often lead to Wilson being excluded or dismissed, specifically by peers, who may have these misconceptions about her abilities and interests. 

 

“I know my physical strength isn’t as great as others my age, but, there are common [misconceptions] if you have this disability and you’re in a wheelchair, like [people] will try to quiz me on certain questions and be shocked when I know the answer. Or, if we’re at recess and they’re playing volleyball or something…they’ll just assume I don’t want to play, and when I ask, they’re like, “do you even know how to spike the ball or whatever?” They just kind of exclude me without even knowing that they’re doing it.” 

 

Despite others having misconceptions, “I don’t notice a whole lot if people genuinely act differently. They just kind of are curious and want to stare if that makes sense…I normally just like being treated as an equal. I don’t think people are genuinely bothered by [being] slightly different.” 

 

Sophomore Lanie Allred was diagnosed with an autoimmune disease called Eosinophilic Esophagitis (EoE), which causes difficulty eating and intense pain throughout the digestive system, as well as Postural Orthostatic Tachycardia Syndrome (POTS), Gastroparesis, and potentially Median Arcuate Ligament Syndrome (MALS). 

 

 “It’s hard because not that many people know about these conditions. I don’t hear a lot of people talking about it. But I think chronic illness in general, they see you going to the hospital and stuff, but that’s not really what it is. I take 15 pills in the morning, 10 at night- it’s these everyday things that you have to do that I don’t think people realize. It’s not just going to the hospital once a month, it’s everyday things that you have to do and live with,” Allred said.

 

Because of these misconceptions, teens with chronic illnesses are often left alone to deal with the daily struggles of trying to keep up academically and socially. Many find themselves unable to function, in part, due to chronic fatigue, a common symptom for many people with any type of chronic illness. Often thought of as being the same as tiredness, chronic fatigue can be a disabling symptom that often doesn’t go away or improve with rest and sleep, and can make it difficult to focus or attend school, and have enough energy to do normal activities and tasks.

 

Therefore, attending school is one of the most consistently difficult aspects of chronic illness.  

 

“In high school, I had to miss so much school because I couldn’t physically bring myself out of bed- even the simplest of tasks would cause me pain,” said 18-year-old McKenna Lindsey, who was diagnosed with a connective tissue disorder called Hypermobile Ehlers Danlos Syndrome.   

 

Having debilitating symptoms not only affects the big tasks, such as playing sports, but it can also greatly reshape simple daily tasks like being able to cook, clean, go to school, or do even basic self-care tasks like showering and getting dressed.

 

Allred’s conditions have had a significant impact on her school and social life as well, preventing her from not only going out with friends but sometimes even leaving the confines of her bed. Allred’s conditions, specifically POTS, make it very difficult to function throughout the day without becoming ill after a few tasks. After attending in-person school for around two weeks, Lanie was forced to return as an online student as she found herself feeling too unwell to attend in-person school. 

 

Some of Allred’s most prominent and bothersome symptoms include Tachycardia (an abnormally fast heart rate). “Whenever I stand up I have to sit and wait and hold my head because [otherwise] I blackout…So that’s really hard- not just being able to get up and go. It’s slow going. I walk up those stairs and I have to take like a ten-minute break until I can talk because I’m so out of breath. Eating hurts my throat, it hurts my stomach, I’ve lost 36 pounds in the past year.”

 

Though symptoms such as Tachycardia or being out of breath may seem mild, these symptoms can be incredibly debilitating, making simple tasks such as getting out of bed take as much energy as a 100m sprint. With conditions such as POTS also comes nausea, dizziness, chronic fatigue, headaches, light sensitivity, inability to regulate body temperature, and at times intense heat intolerance and significant spikes in heart rate which can lead to fainting or near-fainting episodes. These symptoms make it impossible to attend school many days, living in constant discomfort or the threat of blacking out. 

 

“Missing so much school adds so much more stress and depression. Stress because you have no idea how you’re going to get caught up on so much work, and depression because you don’t get to have social interaction like you do at school,” said the anonymous teenager diagnosed with Rheumatoid Arthritis.

 

In not being able to attend school frequently, the social lives of those with chronic illnesses can also become challenging to maintain, leading to a lack of social interactions in general. Being around others at school allows for keeping in contact, but without school, many can struggle to build personal relationships and/or keep in contact with friends. 

 

Elise Hillbrand, diagnosed with Crohn’s Disease at 14-years-old, now 22, remembers back to high school and the impact illness took on her social life. 

 

“During major flare-ups, it was difficult to find the energy to spend time with people. When I can’t really eat or drink anything that a normal young person can, it makes me feel like I can’t fully enjoy socializing. I…adjust activities or see people less frequently.” Seeing less of friends and family while being physically ill can become difficult, and feel especially isolating.

 

Doctor’s appointments can also be a source of stress for many, as they can be filled with a slew of new information, unpleasant tests, and medications, that can be both physically and emotionally draining. These appointments or treatment sessions can additionally contribute to missing out on school or social activities. 

 

For Lindsey, not only did she spend years without receiving treatments or a diagnosis, but upon trying to get help, Lindsey and her family were continuously told “it was just growing pains. But once I got into high school, doctors began saying it was all in my head or [they] didn’t believe me. One doctor in particular, who was a neurologist, told my parents to take me to a psychiatrist because cries out [for help] like this were “attention-seeking measures,” and that I did not “understand real pain.” This visit was especially upsetting to me because I thought I would have to live the rest of my life in agonizing pain without any help.” These dismissals, by medical professionals specifically, can be especially damaging, and can cause those suffering physically to second guess whether or not their pain is valid, and lose hope of ever receiving help. 

 

Sophomore Allred agreed it can be difficult to find doctors who are fully believing, even when there is physical proof of medical conditions.

 

“It’s gotten to the point where they just want to send me to psychiatrists and put me on antidepressants. But, who’s not going to be depressed when they’re in pain 24/7? It’s the most frustrating thing. It’s hard to get someone to listen to you when you’re a kid. Really hard.”

 

She also spoke about how, “with POTS, you really have to do all the advocation for yourself. If you want something done you have to figure out the course of treatment because they like to put you on a bunch of medications and call it good. So I joined several Facebook groups with a bunch of girls the same age as me that have POTS.” This outlet not only gave Lanie somewhere to find others she could relate to, but also helped her to find her own treatment plan that worked effectively for her, beyond what doctors had suggested. 

 

However, sometimes even the treatments and medications can be just as mentally and physically exhausting as the symptoms. Allred, who has a port implanted in her chest as a means of administering treatments, can become mentally and physically tired of it being there at all times. 

 

“I de-access when sometimes I just need a mental break from it, not having a needle in my chest. I really pay for it without my infusions, but sometimes you just need that. You can’t always be attached to something. It was really hard for me in the beginning not being able to just go sit in the shower, because it can’t get wet. We go to the hot springs a lot so not being able to go… was really hard. I’m still getting used to when I’m running an infusion, being attached to a pole.” 

 

Often finding effective treatments comes at a cost, such as becoming more physically limited as Allred experienced, or dealing with the side effects of medications or procedures. These, however, still become preferable to life without treatments, which can be both frustrating and miserable. 

 

In an attempt to find any form of relief during particularly bad pain episodes, Lindsey had even turned to visiting the ER on, “numerous occasions because of my extreme back pain and I remember nurses and doctors discounting my pain and basically telling me to deal with it.” 

 

However, Lindsey’s pain remained debilitating, primarily consisting of symptoms such as, “dislocations of joints easily like my ankles, knees, and hips, but the main symptoms I face are throwing out my back, neck, and ribs. When a vertebra or rib slips, it is excruciating pain and causes my muscles to flare up into intense spasms.” These severe and debilitating symptoms greatly reshaped Lindesy’s social life and academics, and her level of activity. Though a dedicated athlete growing up, Lindsey was forced to withdraw from most sports and activities in high school as the physical consequences of high impact sports were too severe. The effects of being physically limited from the things she used to enjoy, also took a significant toll on Lindsey’s mental health.

 

“I had considered sports a part of my identity and without it, I felt empty. When you can’t do the things you love it takes a huge toll on you mentally,” Lindsey said. It can be especially isolating to have a rare condition at a young age, as it’s difficult to explain to those who don’t understand or find a community that is relatable. 

 

Much like Lindsey, Allred also found herself being cut off from many things she used to enjoy, and in turn, found herself struggling with mental health as well. 

 

“It’s like being stuck in prison, your body is your prison and you can’t get out of it. And I want to do things so bad…but I just can’t do it anymore. It just really messes with your brain. The things that you used to love and enjoy so much don’t even interest you anymore, and being stuck inside and not being able to do the things you enjoy, and seeing all these other teenagers being able to do so much- it’s really hard.” 

 

Due to prolonged isolation from social interaction, the stress of school, health, and social lives taking a heavy toll on mental health, finding healthy outlets is a fundamental aspect of staying on top of mental health for those with illness. These outlets can distract from, or even additionally aid uncomfortable symptoms. When school attendance is limited, it can be hard to stay social and keep friends. When cut off from extra-curricular activities one used to enjoy, new ways must be found to cope with the isolation, stress, and anxiety.

 

Despite his mental health struggles with anxiety and depression, Nichol has found other outlets that help both physically and mentally. 

 

“I started going to the gym in Carbondale and that’s like my main outlet, I go with a friend, and if I don’t feel good and I miss one day, [I] get sucked in and just don’t want to leave the house. If I don’t leave for like four days,  I [feel like] I don’t need to leave ever. I can just sit here and watch youtube videos.” 

 

One of Shantz’s other main outlets is playing Xbox, “Just to be on there talking to friends… We’ll just talk about stupid stuff, ya know, and I just forget about everything else during that.” Finding these kinds of outlets that help maintain a social life and mental health are vital to keeping as positive an outlook as possible. 

 

Allred also found an outlet through, “just watching people that I have no idea who they are, like on youtube or whatever can really help.” In addition, Allred has used Snapchat and Facebook as ways to find groups of people with similar conditions who she can talk with and skype, “almost every night. They can understand fainting when you try to get to the bathroom in the middle of the night, it’s just a normal thing for us. So social media has been an amazing outlet.” 

 

Despite the toll chronic illness can take on physical and mental health, many have discovered new perspectives and empathy through their experiences. They have found themselves more able to connect with others who may be struggling, as well as become better advocates and educators for their invisible, chronic illnesses.

 

“In some ways, it was good that this happened to me because it’s definitely changed my perspective and made me realize that there are some people that just have a battle no one else sees…I have to go and educate people because they just don’t know. Throughout the course, I’ve done my fair share of advocating, because I think it’s a balance between wanting to do better with yourself and wanting to do better in educating [others],” Young said.  

 

Being educated about illnesses and the impact of chronic illness can also help others who may be suffering from the same conditions to feel less alone. 

 

“Many people I know are aware I have EDS,” Lindsey said, “ but do not really understand what exactly it is…Because it is so rare, I want to explain my condition to my friends and others so that they understand what I go through. If I can help spread awareness about Ehlers Danlos Syndrome I am more than willing! I don’t want anyone to go through the struggles I did growing up.”

 

Not only does sharing their stories help these teens feel less alone, bringing awareness to others helps to call out for more research and funding. Without advocacy, many illnesses are never studied in hopes of finding cures, causes, or treatments that otherwise wouldn’t be found. Advocacy also allows those with illnesses to build communities and support systems around them, which makes it easier to function and be social when others can understand what they are going through or what they may need. 

 

Despite the struggles chronic illness can incite, a positive outlook and mindset can make it possible to surmount the pain of any invisible struggle, and keep hope alive. As the anonymous teenager with Rheumatoid Arthritis stated, “I think most people with a chronic illness eventually go through a state that they have the question of “why me.” It definitely is frustrating and can be hard, but when you have those thoughts, you just need to keep fighting. Yes, it sucks, but if you put yourself in the right mindset, there is nothing that you cannot overcome.”