6/5/2019 by Share Your Story

Young Adults with Chronic Illness: The Forgotten Ones

Callum is a young adult with a chronic illness. They are rarely taken seriously. So they looked for their own community where they could be seen and heard.


A YOUNG ADULT WITH A CHRONIC ILLNESS

At some point as a youth, rough-housing in a family of 7 kids led to whiplash or something. Now as a young adult the vertebrae in my upper neck are similarly rambunctious, shifting around between my skull and the top of my spine without permission. They kink up around my brain stem like a garden hose. Bilateral ligament damage has led to frequent and nearly unceasing headaches. Sudden movement can bring unexpected pain. Even innocuous light activities like bowling with friends can be overly strenuous for me.

LIVING WITH A SECRET IDENTITY

My friends often out pace me, I struggle to keep up. They see a normal twenty-year-old, but that’s because I do a lot to mask my discomfort. My peers don’t recognize that it takes effort for me to do what they take for granted. Whether it be something I do for fun or necessities like chores – It takes me more time, and more energy.

All outings require some planning and preparation. It varies based on the season and activity, but there is always foresight required. If I’ll be out for the day, I usually need a backpack to accommodate braces and pain medicine. I check the weather and bring multiple layers in case of temperature drops – my joints lock up in the cold. I look up distances to see if I’ll be able to walk or if I’ll need to arrange for alternative transportation. Factors like this aren’t as pressing to most folks as young as I am (I turn 20 this year) but they have a huge impact on me.  My “youth” is an illusion, obscuring the presence of some major conditions.

SILENT AND INVISIBLE

My diagnoses are not a secret, but I don’t enjoy bringing attention to them. Sharing my medical conditions brings unwarranted pity instead of understanding. So, I often choose silence rather than vocalize my needs. I am becoming more open with my self-advocacy, gradually.

I can get away with silence because I have an “invisible illness”. You can’t see what makes me different. Even if you know about it, it’s easy enough to forget, and it’s impossible to relate to when you don’t suffer from them.

This isolates me from friends because I’m living with needs that they can’t or don’t consider. Even with those who ‘know’, I find myself reminding them that I am not the most able bodied. Because of this, small considerations make a big impact. Simple things like checking in with me, or scheduling resting periods/breaks into our night make a huge difference with my ability to participate. They mean a lot.

HAVING A DIAGNOSIS DESPITE MY DOCTORS

Tentatively (because I’ve cycled through many misdiagnoses and treatments) I am diagnosed with ankylosing spondylitis, a condition that has led to:

  •         chronic inflammation of my joints
  •         spinal pain and deformation
  •         vision distortions
  •         digestive problems
  •         constant migraines, and
  •         body aches

Strangely, no one ever proposed that my problems might be inherited, despite my family history and my mother’s diagnosis (she has it too). I vocalized my discomfort since 2nd grade but it was ignored until junior year of high school. 

Doctors don’t regard me until they get back my biometrics which show I am in fact not a healthy young adult. My age, my bipolar disorder and my anxiety often act as red herrings, misleading doctors and taking attention away from my physical pain. I’m not only a young adult with chronic illness, I’m a young woman so my pain is often blamed on stress. But the more I hurt the more I stress about my limited abilities – a terrible cycle. This exacerbates my symptoms and exasperates me.

Every time I see a doctor that doesn’t take the time to understand I end up getting started on treatment that ends up adding to my problems rather than addressing my disease. This draws my recovery time out further…and I’m running out of patience.

BRINGING RELIEF AND HOPE

One of the only places I can find real relief is Proper Balance Wellness Center. This is the wellness facility where I see a team of doctors, nurses, and physical therapists. This clinic combines chiropractic practices with more advanced physical therapy.

A refreshing thing about this doctor’s appointment is, there’s no deception. I can’t lie and tell them I’m progressing, or get shy while listing off the ever-stacking symptoms. Here my muscles speak for themselves, literally – sensors chime when my body has shifted out of proper alignment. The doctors gauge exactly how strong my muscles are. They see where bad genetics, poor posture and old injuries have wrought their havoc.

This team is thorough. They track my performance and symptoms. Take thoughtful notes. Treatment involves making small lifestyle changes in posture, sleep, and diet. Closely monitored exercise through physical therapy, massages, regular adjustments, and trigger point injections work in tangent with the new routine. Simple, achievable goals allow me to feel hope. A comprehensive approach leaves me more optimistic with my diagnosis.

VALIDATION AND RESPECT

The physical healing at Proper Balance is important. Having my pain validated however is the most satisfying aspect of the clinic. That is what soothes my soul – when my needs are recognized without overshadowing me. Respecting my limits while acknowledging my competency. It makes me feel human, like I am more than just a diagnosis, more than just another young adult with chronic illness. Any medical condition affects more than the body, it impacts social life as well.

WE NEED SOCIAL SUPPORT FOR YOUNG ADULTS WITH CHRONIC ILLNESS

Outside of Proper Balance, I find genuine comfort among online pen pals with chronic illness. Because of the lack of credible information, validation and support in our day to day lives, many teens and young adults with chronic illness are turning to online communities.

On sites like Facebook, Twitter, and Tumblr people with invisible illnesses are being seen and heard. When I was feeling particularly alone and couldn’t find a community I started an online support group myself called “Chronic Illness? More like Chronic Chill-ness”. It’s a causal place for young people to connect. It’s small but it provides a space where we feel understood and can get advice. We talk about insurance issues, challenges with medication, and share gofundme’s to help cover rising treatment costs. Sharing silly memes and diagnosis-oriented jokes is characteristic to this space. It’s how we teens and twenty somethings communicate. Understanding what it means when you lament about “running out of spoons” is so comforting. The more intimate setting also allows for vulnerability and bonding over uncomfortable topics.

INLCUDE YOUNG ADULTS IN THE CONVERSATION

But admittedly an online support group can’t replace ‘real life’ support. Chat groups cannot make up for failing policies and a fractured healthcare system. But they can serve as a place to discuss how to change it. More and more young people are using their online platforms to connect with others and bring attention to these issues. I am convinced that developing better online resources will give young people a sense of empowerment and connection. It will give them the ability to amplify their voices when pushing for healthcare reform. Whether it be face to face or through a screen, Americans need to include and value younger voices.


Callum Radley is a twenty-something living with ankylosing spondylitis. They have been diagnosed with bipolar callum radleydisorder, generalized anxiety disorder and depression. Callum currently supports themself as a freelance artist and jewelry maker. Their works are strongly influenced by their experiences with mental health. Callum hopes to help young people advocate for themselves in the discussions on healthcare policy and reformation. You can find their art on instagram, their online store and their personal blog.


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