True Story: I’ve Had A Chronic Illness Since Childhood

What's it like to live with a chronic illness since childhood? How do you talk about your health? How do you help people understand your invisible illness? Click through for one woman's story
A chronic illness is defined as an illness that “cannot be prevented by vaccines or cured by medication.” What would life be like if you were diagnosed with a chronic illness at age 5? How would that affect you life choices and how you thought about yourself? This is Beryl’s story.

Tell us a bit about yourself! 
Hi there! I’m Beryl, I live in a small town in Virginia called Lovettsville (it’s about in hour from Washington DC). I’m 36 years old, married, and mom to one spirited 6 year old daughter who keeps life super entertaining + mom to another daughter we lost 7 years ago when I was 20 weeks pregnant but still proudly hold in our heart.
I’m a former elementary school teacher, turned entrepreneur…After losing our first daughter I started a blog to document the emotional journey, it blossomed into a business from there, and the rest as they say is history. I quit my teaching job 4 years ago to run an online community called ‘Recapture Self‘. It’s a space where I coach women (primarily moms) on how to reclaim their identity using creativity as the guiding force.
For those of us who don’t know, what is Juvenile Rheumatoid Arthritis?
JRA (which I believe has been renamed to JIA in the last few years) is an chronic auto-immune condition where your body basically attacks itself. Arthritis attacks the joints – which affects my mobility and makes certain parts of my body swollen and painful. My arthritis has primarily surfaced in my knees, but any joint can been affected and as I get older I do also get pain in my jaw, neck, and elbows too.
Many people associate arthritis as being a disease of the elderly. Something adults experience as they age and get ‘old creaky bones’. The Juvenile part of my diagnosis just means that I was diagnosed as a child.

How old were you when you were diagnosed? 

I was 5 years old when I was diagnosed. I honestly don’t remember much about that time in my life except having a hard time moving around and playing like all the other kids played. I had a pretty active imagination though and I do remember a green sparkly glittery baton I used to play with when I was little. I called it my magic wand.
When my joints started to hurt more and more my parents said I would walk around the house using it as a cane. I think the final straw for my parents though was when I woke up in the middle of the night at 5, and crawled into their room crying. My knees hurt so badly that night that I couldn’t even walk.
The next week I was poked, prodded, and sent to several doctors – fortunately a diagnosis and treatment came pretty quick after that.

Getting a serious diagnosis at such a young age is a really big deal. Did it affect how you thought about yourself? 

Indirectly yes. I was that kid that was always picked last for sports. I hated gym class with a passion. I always wised I could run a mile faster. I had anxiety when it was my turn in a kickball game. I frequently felt like an outsider. I knew the arthritis kept me from some of these things, and I wished there were more visible markers of the disease to my friends.
Because to them I looked normal and like I was just ‘really bad’ at sports. When I knew that my arthritis likely played a role in my ability too.

Did it affect how people treated you? 

Yes. I have vivid memories in elementary school of being sheltered and treated like I was super delicate and incapable. One of the chronic conditions paired with my arthritis is having osteopenia, or weak brittle bones. I broke my arm, my wrist, my pinky finger, and my feet growing up – so my parents and teachers were always ultra protective of me.
But, this led to me having to sit out during gym class. The teachers constructed this ‘tent’ out of gymnastics mats. I would sit in there by myself and they’d give me puzzles or blocks or other things to play with. Back then the world wasn’t always as sensitive to inclusion. But it’s a pretty painful memory I have of loneliness, isolation, and feeling like an outsider.
You’ve been living with Rheumatoid Arthritis for decades now. How are you treating it? How do you manage pain on a daily basis? 
I’ve been so lucky to have incredible doctors since I was young. I’ve been on more medications than I can count (the meds can lose their potency if you stay on them for too long) but fortunately modern medicine has kept new options coming forward.
When I was in college I was placed on a brand new (at the time) injectable medication that has been such a gift. There are zero side effects, I only have to take it weekly, I have minimal pain, and it’s the longest drug I’ve stayed on — almost 15 years!
I get grumpy dealing with the day to day realities of life WITHOUT living with chronic pain. How do you keep your spirits up? 
I’ve always pretty much been an eternal optimist. There are days when I worry about lots of things: what to do when the medication stops working, if the medicine is doing damage to my body that I can’t see now, etc…
But somewhere along the way I adopted the motto of taking ‘one day at a time’ and living in the moment. There’s only so much I can control so the worry really isn’t something that serves me.
On the bad pain filled days — I honor the parts of me that remain regardless of my arthritis: my creativity (I write, read, draw, etc…) and my relationships (I have the best family and friends).
Have you been able to move past those limiting expectations you (and others) had because of your diagnosis?
Yes and no. I still have moments when I am challenged and triggered. As a mom it’s been hard to tell my child no I can’t play with her because it’s exhausting to crawl around on the floor or run around the playground. It makes me feel weak, or like I’m making excuses. I have to remind myself frequently that my illness is ‘real’ and it’s ok to set boundaries in this way.
On the other hand I did move past a huge barrier last year and ran my first 5k and 10k races. I was determined two years ago to do a bit of interval training, test the limiting expectations of my past, and see what my body truly was capable of.  I’m not running much these days because after those races my body was screaming for rest, but it helped me embrace the idea that I can truly achieve anything I set my mind to.

What tools/resources/books/websites have helped you navigate this? 

Lately I’ve been LOVING The Mighty.
Also, I had the opportunity to contribute my story to this book WAY back in 1998 which is an inspiring read especially for teens navigating this path.
If we know someone who has a chronic health diagnosis, how can we be most helpful?
Taking them at their word and trusting that they know their body best. We can look totally fine, normal, and happy on the outside but be dealing with immense pain inside. People with chronic illness (especially invisible illnesses) get very good at putting on a happy face. They don’t want to be too much, too demanding, or look like they are throwing a pity party.
I also appreciate being asked about my illness by my friends on random days when I am 100% fine. A simple, how are you how have your joints been I so appreciate. I then know they honor my illness and that I can trust them to support me on the bad days when I’ll need the help most.
What have you learned from this that ANY of us could apply to our daily lives? 
In my business I use the phrase “the journey to your creative self is never far” but it’s definitely because a life motto for me too. With the limitations I’ve faced physically I’ve turn to my mind and my creativity throughout my life to understand myself and the world around me. Taking time to be creative each day is my lifeline whether that be through writing, taking pictures, sewing, or a deep conversation with a friend over coffee.

Thank you for sharing your story, Beryl. Do you guys have any questions for her?

P.S. Interviews with a woman who’s allergic to “pretty much everything” and a woman who has the breast cancer gene.

4 Comments

Marlene @ Idle Hands Awake

Thank you so much for sharing your story! I’ve had chronic migraines and concurrent illnesses since I was four. Unfortunately I did not get proper diagnosis and treatments until I was 20. Being ill can be incredibly difficult and frustrating, but it’s also helped me truly appreciate my “well-days”. Wishing you more pain-free time!

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Lesley S

Thank you for sharing your story! I work for a pediatric rehab facility, so we see lots of patients with chronic childhood illnesses. I am going to share this article with my coworkers – we recently added a couple of psychologists to our staff to help patients and families address the challenges that come with childhood illnesses. Hoping we can do everything we can to help young people have some coping mechanisms, listening ears, and tools to help ease some of the emotional and physical stress they have to deal with. Appreciate hearing from someone who has lived it. Wishing you the best!

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Michelle

Thank you so much for this interview! I was just diagnosed with type 1 narcolepsy (narcolepsy with cataplexy) 2 months ago after 20 years of misdiagnosis. Beryl I appreciated your points about the importance of setting boundaries and how difficult that can be. That’s my biggest challenge on a daily basis because I was brought up to think that sleepiness is laziness but I need to take naps in order to get any relief from my eternal sleep deprivation. I also loved your advice to people without chronic illness: trust the person at their word. Since my diagnosis I’ve wondered if the diagnosis could be a bigger deal for me than the treatment since doctors denied my reality for so many years. It’s so important to feel like the people around us love and trust us. <3 <3 <3

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