Why I Think It's Important for Every Chronic Illness Story to Be Heard

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Because I blog about living with a chronic illness, earlier this year I was asked to be an ambassador for our local Walk to Fight Arthritis in St. John’s, Newfoundland & Labrador. As an ambassador, I spent a lot of time preparing for television and radio interviews to talk about how arthritis affects people and how important it is to support research and community initiatives to help Canadians who live in pain. A big part of my preparation was trying to find the right way to answer a very popular question: How does arthritis affect our daily life? I get asked that question more than any other, and I think it is because even though people want to understand, they ultimately have trouble relating to what we go through. Because it is such an important question, I always wanted to be able to answer it eloquently and definitively. But the fact is, there’s just no way to know what a day will be like when you have a chronic illness.

I think the hardest part of having a chronic illness is the unpredictability of it all. Doctors will tell you to take it one day at a time, but sometimes even that is nothing more than a comforting cliche. Some people can’t take it much more than one hour at a time, because their body is in a constant flux.

During my time as ambassador for the walk, I actually ended up missing out on a lot of the interviews scheduled for me, leaving my co-ambassador to do most of the work. And that was because of the unpredictability of living with a chronic illness. When I signed up to be an ambassador, I felt strong, energetic and determined. I couldn’t wait to do those interviews and have a part in reminding people that arthritis isn’t just an “old person’s disease.” And when I signed up I had no reason to believe I wouldn’t be able to attend some of those interviews. I had no way to predict that I would be in and out of the hospital and off from work.

But that’s what a chronic illness like arthritis can do to you. It not only causes painful symptoms, but it can destroy any sort of routine you have. It essentially turns your daily life upside-down. It can affect every aspect of your life in ways you probably don’t even know yet, because each day can bring new surprises.

I did what I could from home to promote the walk while I tried to recover from a lupus flare-up. Lupus is an autoimmune disease that can cause symptoms like joint and muscle pain, photosensitivity, fatigue and organ problems. Having been diagnosed only recently, I know it will take me a long time to fully understand how my symptoms will be triggered. Once I have a better understanding of my triggers, I will have a better chance at controlling my lupus, but even that won’t be a guarantee. Something new can always become a trigger. Even when I’m having a flare-up, I can experience 10 different symptoms at 10 different times. They may remain steady throughout my flare-up, or they may come and go as they please.

There is no guide book for chronic illnesses. No two people have the same experience, even if they have the exact same disease. No one can warn me when a bad day is coming, or what that bad day might look like for me. Imagine how difficult a concept that is to grasp when you’re in your 20s and trying to build a career and maintain a healthy social life.

Chronic illness gets in the way. That’s the easiest way I can explain it. You make life plans, just like everyone else, and then chronic illness comes along and decides to change those plans. It doesn’t always change them profoundly. Sometimes it’s just one little modification at a time: a missed interview, having to sell a concert ticket two hours before a show, a short absence from work or having to watch your friends go on an afternoon hike without you. And sometimes it’s a giant concrete road block dropped right in the middle of your path: a lost job, a cane, an inability to pursue your dreams of being a musician.

Every single person with a chronic illness has a different story to tell. But each story has a common thread: an unreliable narrator and an unexpected plot twist. We honestly have no clue what tomorrow will bring for us. We can make plans because we still have the same good intentions we possessed before we got sick, but we can’t promise our bodies won’t have a different plan for us. Tomorrow we might be able to go for that walk or spend eight hours working, or we could very well be at the hospital hooked up to an IV. Your guess is as good as ours. And that’s why I wanted to become an ambassador for The Walk to Fight Arthritis to begin with, because I think it’s important for all our stories to be heard.

I managed to muster up the energy to attend the walk, and I stood in front of a gymnasium full of people with arthritis and supporters to give a speech about the importance of raising awareness. I put a face and a name on a disease that maybe not many people knew about before, and I gave a real-life example of how the unpredictability of my disease can wreak havoc on my life plans.

I hope that with the help of our local organizations like The Arthritis Society, more people will come forward to tell their stories to the masses. And if we keep educating people about our illness, maybe in the near future we won’t have to keep reminding people that our diseases are real — no matter what age we are — and that the effects can be truly devastating when we don’t have the support and understanding of our community.

woman on stage giving a speech
Lisa giving her speech.

Follow this journey on Damsel in a Dress.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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What I Should Have Told the Reporter Who Asked, ‘What Is Arthritis to You?’

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A news reporter asked me on air, “What is arthritis to you?”

Silence. I fought to get the words out, and I struggled to come up with an answer to such a blunt question. All I managed to say was, “It’s my life…” We sat there in silence for 30 seconds as he waited for me to give a more thorough answer.

…But I had nothing else to say. Ever since then I’ve been grappling with the question, “What is arthritis to me?”

Juvenile: because I was a child. Idiopathic: because no one could tell my parents why. Arthritis: because I was a child in what many people associate with a “senior’s” body, because my body was self-destructing.

When I was 4 years old, arthritis meant yelling for my parents from my bed because I couldn’t walk. It meant my dad had to help me walk like I was a toddler. It meant swollen joints and a pain I can still remember to this day. When I was 4 years old, arthritis was a word I didn’t know. It meant physiotherapy and pain management therapy. It meant not being able to sit cross-legged on the floor with the other kids. It meant poking and prodding and dozens of doctors circling the room. When I was 4, arthritis was a hospital bed.

When I was 10 years old, arthritis meant being teased at school because I was allowed a chair in the school assemblies. It meant buying Tic Tacs at the grocery store so I could become an expert at swallowing the cocktail of pills I was prescribed. It meant eye tests for uveitis and cortisone injections. It meant being “different” in a world where kids are unkind if you’re not like them.

When I was 13, my arthritis meant remission. I thought I was cured. Everyone else thought so, too…

When I was 18, arthritis meant an intense relapse. It meant a literal overdose of medication. It meant chemotherapy medications, and it meant hair loss. It meant mono. It meant sickness and infections. It meant deferred exams, missed classes and doctor’s notes. It meant rapid weight loss, then rapid weight gain. It meant quitting all physical activities and more cortisone shots. It meant weekly blood tests and needles. It meant surgery. It meant seeing my parents and doctors cry together. It meant lying on the couch for months on end because my body couldn’t fight for itself. It meant weakness. When I was 18, arthritis meant my life was turned upside down.

At 23, my arthritis is still a character in my story, but its meaning has changed. It means making the best of the good times, and it means going on with life because there are so many positive things coming my way.

In retrospect, I guess this means I answered the reporter’s question accurately. What is arthritis to me? It’s my life. It’s my morning, my afternoon and my nightlife. It’s my everyday life.

What I failed to answer that morning was this:

What is my arthritis to me? To me, it’s a challenge I accept. It’s a reminder to never give up. It’s a reason to choose health over everything else. It has led me to discover my life’s goals and passions. It has shaped me into the person I am today. It seems odd to say to someone who doesn’t understand, “It’s my life,” but to me, it means so much more.

woman sitting on rock looking at mountains and lake
Kate enjoying a beautiful view

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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A Young Mother's Guide to Walkers

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I’ve had rheumatoid arthritis for a while. It was kind of dormant when I was pregnant and when my babies were little, but since my 2-year-old was about 6 months old, my health has been pretty steadily in decline. Now, I’m on a lot of different medications, and my doctor is trying as hard as the insurance company will let her to try to get stuff under control, but long story short, things are not under control. I’d been thinking that I needed some kind of assistive device, as my hips have been flaking out on me. You expect them to work, then boom — you’re on the ground. I thought about it, almost constantly, for quite a while. But many aides require heavy use of your hands, and my hands are one of the most affected parts of my body.

Close-up of woman's left hand wearing a wedding ring
My hand on a pretty normal day. It doesn’t open all the way hardly ever.

After a lot of thought and discussion, I decided to get a four-wheeled walker with the seat and pouch and such. I could use the palm of my hand to lean and not have to use my fingers to grip as much, whereas a cane would be nearly impossible and probably cause more hand pain than it was worth. But when I decided I needed one, I had no idea how to go about it. I don’t know anyone very well who has a walker. I was talking to my husband, Ben, and said, “So… Do I just, like, Amazon one? Do they have walkers with Prime shipping?” I didn’t know if that was what I was supposed to do, so we held tight. A couple days later, we were at my in-laws’ house and my husband mentioned our quandary. My mother-in-law looked at us at said, “Well, do you want to pay for it?” We were totally lost, so she explained that I could go to the doctor, who could give me an order, and that insurance usually pays for it. At my next doctor’s appointment, she gave me an order and told me to take it to a medical supply store. “If there’s something you want and my order isn’t sufficient, they can call me and we can revise it,” she said. Got it.

My husband and I went to the medical supply store, gave the saleswoman the order and she asked who it was for. I let her know it was for me, and she said, “No, hon, who’s going to use the walker?” Again, me… Then she hopped up, made me sit down and talked me through the simple process, which was giving her my insurance card and choosing blue or red and small or large wheels. There was also an option of a similar walker that converted to a wheelchair, for an additional expense not usually covered by insurance, whereas most insurance companies cover the standard walker in full. It was tempting, but I thought the walker itself was enough.

I’ve taken it out several times now, and I have to say, it’s pretty fantastic. I have my own seat all the time, which is surprisingly comfy foam, and a place to stick my purse. However, it’s kind of hard to wrap my mind around being 29 and using a walker. The fact that it’s shiny and electric blue does help, but I decided it still needed some pizzazz, so I added awesome holographic streamers and a bell. Pretty fab.

Woman with her walker on the grass in front of a building

It walks, rattles and rolls, and it’s awesome. OK, it doesn’t rattle, which is good, because that would be super annoying.

When my doctor gave me the order, she told me to use it, but not give up hope that the time will come when I don’t need it. I’m trying really hard. In the mean time, I’ll enjoy my streamers.

Follow this journey on Positively Rheumatoid.

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To the People Who Think My Pain Is 'No Big Deal'

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Many conditions of chronic illnesses are often glossed over because they do not sound that painful or difficult to deal with, and the person may even look well. Are they just being “lazy” and “faking it”?

Prior to experiencing these symptoms for myself, I might have been guilty of certain ignorant and unkind thoughts within the privacy of my mind.

1. Joint Aches

“It’s one of those little things that old people complain about. It’s just an ache, not even a ‘real’ disease, how bad can it really be?”

That was before I developed rheumatoid arthritis and learned just how terribly wrong I could be. I learned that it isn’t just a “little” pain, but a debilitating one. Your elbows, knees, wrists, ankles and all other joints can puff up into a sensitive, red swell, where the slightest alteration of angles, an accidental brush against any surface or doing tasks such as fastening your bra can trigger intense pain.

Forget about “light” exercises — you might have trouble even walking to the bathroom. Someone I know suffered these horrid aches for four years, and she had to go up staircases by sitting and pushing herself up one step at a time, every day.

2. Muscle Aches

“Is it like a muscular ache you get after exercising?” This is the most common question I get from curious friends. (Thank you for asking!)

“That muscular ache can feel quite good, actually!” Unfortunately, this muscular ache does not feel good in any remote sense of the word. In fact, for me it is worse than the joint aches.

But what does it feel like? In all honesty, it feels as if there are thick nails pounding through my muscles deep into my bones, relentless in their drone-like repetition. It is severe enough to keep me up all night.

3. Dry Eyes and/or Mouth

You’d probably imagine this to be more of an annoyance than anything else, but it can actually make a tremendous impact on the quality of your life. Having dry, inflamed eyes is like having sand scratch against my eyeballs all day long. I used to bathe them in eye drops from morning to night, but the relief provided only lasted for that brief moment of contact.

Having a dry mouth is a bigger torture to me — a million tiny pins piercing through the surface of my tongue, throat, cheeks and lips, with a burning sensation, as if sucking on chili, thrown in for good measure.

Who would have thought that one’s moisture level, which seems like something that could be easily restored either through natural or artificial means, could be so deceptive in its ability to cause pain?

It is not uncommon for me to be kept up by such conditions late into the night, and if I do manage to drift off to sleep, it’s usually from the exhaustion that comes with enduring too much pain.

To those of you who can relate, what other symptoms or side effects did you think were “not such a big deal” prior to experiencing them personally? And to those who are curious about other symptoms — what else would you like me to try describing?

Follow this journey on A Chronic Voice.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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When You Get That Dreaded Phone Call From Your Doctor

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I got the dreaded phone call from the doctor on Monday. If you live with a chronic illness, you’ve likely gotten it before: “We need to discuss your blood test results.” I know what this phone call means. It means something has gone wrong.

I remember the first time I got this phone call. I was 29 and had been experiencing sore joints for a couple of weeks. My doctor said it was just a virus, but he’d run some blood tests to be sure. About four days later, the medical practice asked me to come in to “discuss your blood test results.” Not long after that, I was told I have rheumatoid arthritis (RA), and my world crumbled for a while.

Over the next couple of years I received the call again and again: “We need to discuss your results.” Never once did those results end well. Generally, they led to more medication or scans or, at one point, to major surgery. I learned to dread seeing my phone ring a few days after I had tests done. The emotions it would raise were horrendous, and just from a simple phone call. I remember one time when I saw my phone ring and it was the specialist’s office, I burst into tears and just stared at my phone for an hour before I could bring myself to call them back.

About nine months ago, though, my phone didn’t ring following my RA monitoring blood tests. When I saw my doctor I finally received the news I had been dreaming about — my RA was in remission! It was like being able to breathe again after being weighed down by RA for a couple of years. Over the last nine months, the monitoring blood tests have continued, my phone has stayed silent and I have rebuilt my life into something I am very proud of.

Then on Monday, the phone call came and my world fell apart. It’s hard to put into words just how shattering it is to be facing another flare of RA. Even before I have confirmation that my RA is flaring, all the old emotions have surged to the surface. The fear, the doubt, the sadness, the anger — all triggered by that phone call and by those words that are the siren song of ill health: “We need to discuss your results.”

I will say that I have found one small positive from the dreaded phone call — it prepares you for what comes next. As I ready myself to see the specialist next week, I have had a chance to prepare my mental defenses. I have the opportunity to give my support network the heads-up so they know they might need to provide extra support if the news is bad.

Most importantly, it’s given me the chance to remind myself that I have fought and won this battle once before, and I can do so again.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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My Body Is Not My Enemy

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“It is a radical act of love to
befriend yourself.”
~ Jon Kabat-Zinn

Words are powerful.

I learned that as a little girl the first time someone made me cry on the playground by saying they didn’t want to be my friend. I learned it again when I was a little older, fighting with my brother in the back seat of the car; I told him my parents didn’t love him as much as they loved me. My mother immediately stopped the car and told me in no uncertain terms that it wasn’t true, and I was never to say such a thing again. I also learned the power of positive words: accepting compliments without rejecting them (it took practice), and as a young woman in the midst of first love, experiencing the fear and the bliss of saying “I love you” for the very first time, and hearing those words in return.

I’m a writer and an avid reader. Words are my joy and my outlet. But some words I reject, specifically the ones the medical establishment assigns to autoimmune disease:

  • Your body is attacking you.
  • Your immune system is out of control.
  • Your body is broken.
  • Your body has betrayed you.
  • You will continue to get worse.

When I developed rheumatoid arthritis, my sister started doing some research. “Eileen, it’s like your body is now your enemy,” she told me.

I don’t accept that. I have a different perspective.

  • My body wants to heal and is doing everything in its power to do so. Autoimmunity is a miscommunication within the body, not an intentional war within.
  • Symptoms are my body’s way of telling me something’s wrong and asking for help. I had many signals for many years before rheumatoid arthritis hit. Like many people, I misinterpreted or ignored those signals.
  • My body does a million things right every day which I take for granted. From a steady heartbeat and oxygen supply, to trillions of cells doing zillions of processes every second, sending signals bodywide that let me move my fingers to type these words, allowing me to speak, to sleep, to sing and to love, controlling all aspects of homeostasis from body temperature to cell regeneration, my body is amazing and is totally on my side.
  • My body needs my love, not my anger.
  • My body’s potential is infinite.
  • My body and I are one. There is no separation.

This isn’t a Pollyanna viewpoint. It’s hard  having an autoimmune disease. Even though many of us speak of the gifts that come with life’s challenges, let’s be honest: we’d much rather be 100 percent healthy. Some days, you need to cry. Other times, you want to scream. But I don’t hate my body, I don’t blame my body. Every day, I recommit to loving my body, and I believe that’s essential to healing. If your child is sick, do you get mad at them or do you nurture them, doing everything in your power to help them be well? Don’t our bodies deserve that same unconditional love? Don’t we?

A painting of a purple woman holding a pink heart to her chest. There are rainbow mountains in the background.

A version of this story originally appeared on Phoenix Helix

Illustration by Rita Loyd of Nurturing Art (used with permission)

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