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What You May Not See When You Look at a Person With Rheumatoid Arthritis

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When you see me at work in the morning, you don’t know what it took just to get me in the door. I drive with the heated seats on, air conditioning blowing, tennis ball lodged between my hip and the center console and an ice pack around my knee. Even with all of that, I am still typically gripping the steering wheel in pain, just trying to get to work so I can get out of the car and move my joints.

When you see me at the gym, wearing my headphones, working out next to you, you don’t see what it took to get me there. You don’t know that every afternoon, my pain increases substantially, a fever sets in… I feel like I have the flu. Every. Day. I have to convince myself to go to the gym because I know the movement is good for me. There are days I cry on the commute to the gym but power through because I won’t let this disease dictate every single thing I do.

When you see me park in the handicapped spot at Target and get out of the car, smiling at my daughter, you don’t see the struggle behind my happy face. You don’t know that one good trip to Target will knock me out for the day. You don’t know that my daughter says she enjoys going with me because I’m funny and we have a good time, but that I know she knows I need help.

If there is one blessing I’ve gotten from my rheumatoid arthritis diagnosis, it is that I’m aware of what I might not be seeing. I encourage you to not judge those with a chronic illness, to not question the amount of pain they are in, or how awful their pain really is. And to go a step further, when you see someone slowly walking across the road, instead of feeling frustrated that they are slowing you down, take a minute to realize she may be going as fast as she can.

Image via Thinkstock.

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Why I No Longer Believe I'm Being 'Strong' By Hiding My Disabling Conditions

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When I was 5 years old, my throat hurt. So did my head. I felt miserable, but I didn’t tell anyone. Not long after, my leg began to hurt. I still didn’t tell anyone. I walked the two blocks to my kindergarten each day, pretending I was fine. One morning, my body decided not to tolerate this stoicism anymore, and I collapsed on the sidewalk in front of my school. An eighth grade teacher saw me fall from his classroom window, ran outside, picked me up, carried me into the building, and wouldn’t leave my side until I was taken away in an ambulance. At the hospital, my terrified parents were stunned to discover that I’d been living with untreated strep throat, which cause rheumatic fever. As a result, I have to deal with damage to my heart every day for the rest of my life. Why? Because I refused to tell anyone when I was sick and miserable.

Eleven years later, I was badly injured in an auto accident. When a physician told me my left arm needed to be amputated, I nodded and said, “Don’t scare my parents. Let them know it’s OK.” The physician looked at me with horror and refused to reassure my parents. He insisted on showing them my injuries and explaining how serious they were. My mother began to cry, and my father fainted. I didn’t want anyone to know how badly I was hurt.

After this auto accident, I endured too many major surgeries to remember. I endured gangrene. I endured painful physical therapy. I endured debridement three times per day for nine days, and that’s an agony that I cannot describe. I never cried, not once, but I could not stop myself from screaming. My mother cried more, and my father fainted again. What I did not endure was amputation, because the physician who’d claimed it was the only option simply could not bring himself to cut off a 16-year-old’s arm. He sent me via helicopter to a different hospital to receive care from a different surgeon. He told me that I would never use my arm again. He grinned and nodded at me when I replied with an expletive about what he could go and do to himself. I asked for a cigarette lighter, and I repeatedly tried to light that thing until finally — two years later — I succeeded. Why? Because I refused to live as a victim. I didn’t want anyone’s pity.

I was probably 35 years old when I realized something new was wrong. I didn’t tell anyone. Family and friends would feel hurt, angry and frustrated when I’d cancel plans because I was “sick.” I wasn’t diagnosed with rheumatoid arthritis until I finally couldn’t stand what was happening to me and admitted to my doctor that I had a problem. By then, I was in my early 40s.

I write about my disabling conditions so my friends and family members understand that I love them and don’t want to cancel plans with them, but that I sometimes need to do it. I write about my conditions so others with similar conditions feel less alone, and so they know we can emotionally help each other through the difficult days.

I write about my conditions because for decades, I thought I was being strong by not complaining, by hiding my pain, by smiling and joking when I should have been resting my sick body instead of adding stress to it. I wasn’t being strong; what’s strong is being a vocal advocate for myself and for others who have disabling conditions.

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An Hour in My Life With Rheumatoid Arthritis

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Imagine waking up and reaching for your phone to check the time. Only you knock the phone to the floor because your hand doesn’t open. The joints are stuck. So you start trying to move the joints enough to get your hand open. After a few minutes you can at least awkwardly pick the phone up. Swiping is going to take at least another 10 minutes so you leave the phone for the moment. Imagine the frustration when even the simplest of tasks isn’t simple.

Imagine stepping out of bed and you can’t feel the floor. All you can feel is the burning barbed wire in the joints in your feet as they take your weight. Then you stumble into the wall because those same joints are stuck, too. Imagine that you really need to pee so you resign yourself to crawling on your knees and elbows to bathroom because it’s quicker and less painful than trying to walk. Imagine the indignity of it.

Imagine finally getting the joints moving enough so you can get dressed. You don’t buy clothes with buttons anymore because they hurt too much to do up and sometimes you couldn’t do up a button even if you wanted too. Imagine not bothering with makeup because you can’t grasp the smaller brushes or liners. Imagine putting on a pair of joggers yet again because you can’t handle the pain of wearing even low heels these days. Imagine feeling like less of a woman because of this.

Imagine that you look at your schedule for the week. Yet again you have blood tests to do. The lady at the blood test place knows you by name you go so often. Then you have the specialist appointment. Physical therapy. Need to stop at the pharmacy to fill another script for a medication which may or may not help. You look at your bank account and work out how much the rheumatoid arthritis will cost you this week. You watch another couple of hundred dollars disappear from the money you put away for a holiday. You wonder what will happen when that money runs out. You wonder what holiday you would have gone on if you were well. Imagine how depressing it is when every week you have to spend time and money looking after an illness you never wanted in the first place.

Imagine that you sit down for breakfast. You don’t have an appetite due to your liver not working properly but you need to have food with your medication. You count out the 8 tablets you need to take this morning. You fight a mental battle around the pain killers. The need for pain relief vs the need to protect your liver and kidneys from further damage. You resign yourself to going without. You read through the information your specialist sent you on a new clinical trial. Some medication that might be more effective than the last one. You feel your hope rising until you read the long list of possible side effects. On the TV, an ad comes on about the latest “breakthrough” for arthritis. You watch in hope but it’s nothing new. Imagine the endless cycle of hope and hopelessness an incurable disease brings.

Imagine your baby son starts crying so you go to pick him up. Your left wrist explodes in pain as you lift him and you force yourself to hang on tighter so you don’t drop him. You look into his eyes and pray that they find a cure so he never has to know what it’s like to live in pain. Imagine the fear and guilt of knowing your child could develop RA too for no more reason than they have your genetics.

Imagine you are the only person your age you know who has rheumatoid arthritis. Imagine how isolating that is. Imagine trying to explain what you live with and only getting blank stares in return. Imagine the pressure to be OK even when you aren’t.

Imagine that the above represents one hour of your life. Now you just need to do this for the rest of your life.

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The Naked Truth of What It's Like Wearing a Face Mask in Public

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I sat in my car for a good 10 minutes while having a ridiculous internal struggle in my mind, before I mustered up enough nerve to get out of my car in the grocery store parking lot…

Me, arguing with myself inside my head:

“OK, I’m here and I’ve got my face mask ready to go.”

Stares blankly at the mask.

“At least it’s pink.”

“There are tons of cars here, maybe I should come back later.”

Fumbles with the mask in my hands.

“Stop worrying and just put the mask on.”

Puts the mask on and adjusts it on my face and messes with hair.

“Yep. Everyone’s definitely going to stare at me.”

Anxiety builds quickly.

“I feel like I can’t breathe with this on.”

Sweaty, panicky and hot.

“Calm down. Slow your breathing. Focus on why you are doing this.”

Closes eyes.

“You got this. You have to do this for yourself. Just get out of the car.”

Quickly gets out of the car. Anxiety.

Stares at reflection in the window.

“No turning back now.”

Peeks around corner of the car.

“Why is the whole world at my grocery store right now?!”

Walks towards entrance avoiding eye contact with everyone.

Grabs cart, turns it around to get inside the store. Almost collides with a woman putting her cart away.

“Sh*t.”

I exhaled and it felt like she and I froze in time while the world around us kept moving. I felt stuck, like her staring eyes paralyzed me. I could hear my heart beating out of my chest. She sees me. Me, the sick girl. She sees me.

I guess I can’t say that I saw that going differently in my mind. I guess that I hoped wearing my face mask in public for the first time would feel less like a nightmare and more like… I don’t know, just another day at the grocery store.

Maybe “nightmare” is a tad extreme. But here’s the naked truth — I have never… ever…  felt so vulnerable, so exposed, in my 13 years of having autoimmune disease/chronic illness. Anxious. Nervous. But above all, incredibly vulnerable and exposed. So much so, that my invisible illness didn’t feel so invisible anymore.

Recently my rheumatologist and primary care physician had a “heart-to-heart” with me about how often I get sick and what we can do to help keep me healthier. Because, you know, getting the flu, strep throat, walking pneumonia and having chronic sinusitis and chronic allergies isn’t the greatest thing for my nonexistent immune system. I do everything I can to be as healthy as possible, but regardless, getting sick every couple months keeps happening. It hinders my already reduced quality of life. Hence the face mask. After gentle nudging from my doctors I agreed to give it a try.

A blessing and a curse about autoimmune disease/chronic illness is that it is “invisible.” Especially to people in public who don’t know me or don’t know that I have a chronic illness. It’s sort of like a security blanket that I wrap myself in, that helps me feel and appear “normal” out in public. Wearing the face mask rips that blanket off of me. No place to hide. No safe place. Nothing protecting me. No comfort. No more faking “normal.” Everyone can see the sick girl…

I imagine I feel these things because I’ve been able to “hide” for so many years. Sure, there are numerous people I see on a daily or weekly basis who know I have an autoimmune disease/chronic illness. But those people are my loved ones — family and friends. They have compassion and an understanding of my fight. I trust in them.

It’s a completely different dynamic when it comes to the general public. Let’s face it, the majority of people who do not have a chronic illness (or haven’t been exposed to someone who has one) isn’t going to know what to make of the young woman wearing the face mask who looks “normal” other than the fact that she has a face mask on.

And that’s one of the most challenging things to deal with as the one behind the mask. They don’t understand why I’m wearing the mask, and don’t think about how their stares or comments affect me. I’ve heard people make comments like, “Why is that girl wearing a mask?” And, “Something is wrong with her.” It makes me feel misunderstood and judged. Which is a horrible feeling to have when I already had to muster up a lot of courage to wear it public in the first place. The lack of compassion is so disappointing.

Another aspect of this challenge is not knowing how someone is going to react to seeing me in the mask, and/or what someone might say to me or ask about. Furthermore, how those situations may make me feel and how I respond.

Since my first time wearing it to the grocery store I have worn it to a couple of retail stores, the bank, grocery store again, and most recently the airport/airplane. Unfortunately, the most common experience has been being stared at, judged and misunderstood. I even had a flight attendant ask me, “Are you OK?” as she pointed at my face mask. Poor word choice, “OK,” to direct toward someone who is chronically ill. Why would she (especially a flight attendant) make the assumption that in some way I must not be “OK” simply because I have a face mask on?

I have only had one pleasant experience so far — it was with a TSA agent. I was in line to go through the metal detector wearing my Wonder Woman face mask when the agent said “Wonder Woman, I like that face mask!” I had been avoiding eye contact with everyone, but when he said that I smiled and said thank you. I proceeded to set off the metal detector, per usual, so I told the same agent that I have metal hips and wrist. He replied, “Wow! You really are Wonder Woman!” I laughed with him and thanked him again. I don’t think he realized how much his human kindness helped me feel less anxious and more comfortable in that moment.

My hopes in writing this blog is that it helps others in the autoimmune/chronic illness community who may be having similar experiences. Maybe it provides validation to someone that they aren’t alone — that we can relate to one another, and get through different or similar struggles together. By wearing the face mask, I hope that it helps create awareness in the general public for invisible illnesses.

Wearing it has been a challenging experience, but the benefit far outweighs the negative — the benefit being my health. My health always should and needs to come first — I cannot let the negative dictate the choice to be healthy. Even though I’m feeling not so invisible now, I know that in time I will become more comfortable with my illness being “visible.” I’m just not there yet…

This blog was originally published on Dina Neils: Titanium Triathlete.

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When I Have to Balance My Rheumatoid Arthritis With the Needs of My Son

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I look down at my hands and I can’t quite figure out why the joints are so red and swollen today. I’ve spent the last three years managing my rheumatoid arthritis (RA), so I know how to self-manage effectively.

Except I’m not managing my RA right now.

Alana Schuurs and her son

I realize this as I run through my self-management checklist in my head. I forgot to take my medication this morning, and I can’t remember whether I took it yesterday. I have barely done any exercise in the last two weeks, my diet is all over the place, my sleep is broken and I haven’t even had any fresh air or sunshine in nearly a week. No wonder my joints are bad.

I face the reality that I’m no longer self-managing my RA. I know why this has happened, and I’m at a loss for what to do about it.

Two weeks ago I gave birth to a beautiful baby boy. He turned up early and was only a little guy, so we have faced the challenges many parents with premature babies have. We have spent as much of his life in the hospital as we have at home. We went to the emergency room two times after he became unresponsive and stopped feeding. My son has had a rough start to life. 

I look down at my hands and realize they’re a physical reflection of that rough start. I can’t put my needs first as I have an unwell baby to care for. Therefore, my usual self-management plan has gone out the window. The problem is, though, how do I care for him if I’m unwell? This is a conundrum I have never faced before while living with rheumatoid arthritis. How do I balance my care needs and my son’s needs? I battle in my head whether it’s selfish to try to meet my needs more.

After much agonizing, I understand I can only start with what I know works. I take my medication, and I make a promise to myself that no matter how tired I am I will take it every day. I will take it because I have a son who needs a mom who can button up his clothes. I pack the nappy bag and carriage, so that after his next feed, we can go for a walk outside. I will exercise and get some fresh air because my son needs a mom who can hold him when he cries. I eat a banana rather than the prepackaged junk food in the cupboard. I will resume my low-inflammation diet because my son needs a mom who can fasten the tabs on his diaper. 

I realize that self-managing my RA is not about putting my needs first. It’s about ensuring my son has a mom who is well enough to meet his needs and that’s OK.

Finally, I write this all down. I know there will come another day when I look down and see red, swollen joints. On that day, I will read this back and remind myself the need to self-manage my RA didn’t stop when I gave birth, rather it became more important than ever.

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Why I Continue to Teach With Rheumatoid Arthritis

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“What do you do for a living?” Upon an initial meeting, people often inquire about your work. Employment not only offers a paycheck, but also a mode of self- identity. Who we are is largely defined by how we spend most of our waking hours. Your livelihood becomes more than a way of securing the necessities of life; it becomes your way of life. But imagine if the very job that fed your family was also causing physical damage to your bones, joints and muscles. Now… what if this very work not only defined you, but you also believe it liberated your soul from its physical self? This conflicting congruence of emotions has been my life for the past 25 years.

As a classroom teacher who is completely enamored with her work, I fight to continue to impart knowledge. Basically, I fight to teach every single day. Diagnosed with juvenile rheumatoid arthritis at the age of 13, fighting against my body is a natural daily occurrence for me. After numerous medical treatments, seven joint replacements and other surgeries, I have taught on a cane, a walker and a wheelchair. I have undergone four hip replacements, one shoulder replacement, and two jaw joint replacements. In other words, I have lost my “teaching” joints. As an educator, I stand for long periods of time, thus causing stress on my hips; I overuse my jaw joints by projecting my voice for hours on end; and finally, I utilize my right shoulder when writing a magical lesson on the board. All of my joint replacement surgeries occurred during June or December due to school vacations.

Knowing how important each contact hour is to the learning process, I have always elected to return to the classroom in record time. Quite honestly, after each surgical procedure, I needed my students as much and perhaps more than they needed me. This symbiotic relationship has enriched my life and filled my soul throughout many painful periods.

On many occasions, I have felt a particularly swollen joint scream for attention, and after dosing myself in Ben-Gay, I have walked into the classroom anxious to share a literary piece with my students. It is the mere act of partaking in this ageless educational ritual that makes me fight to remain in the classroom. Hearing their views and their reactions to a literary piece, whether positive or negative, creates a fiery, healing force within my body. An army of endorphins is produced to protect and defend my joints from the immediate battle. But what about the greater war? After the day is over and I have taught for three to four hours in a row, how do I muster the courage to limp to my car and drive home?

Conventional wisdom promotes that teaching has little to do with physical ability and everything to do with your intellect. This popular notion is not exactly accurate. I have fought a long, arduous battle just to remain in the classroom. But exactly how did the young girl with old bones find her life’s calling? After I graduated from college with a degree in journalism, I set out to find a job in the field and instead landed in a classroom. It was not a traditional path by any means, but it was my path. One day while in between jobs, I was asked to substitute a class. Never before had I experienced such an emotional rush of excitement and panic at the same time. It was an adrenaline rush that fed my body. I was, for lack of a better term, hooked. A few months later, I enrolled in a teacher preparation program and eventually graduated with a master’s degree in education.

However, it was not smooth sailing; it never is when an autoimmune illness shares your body. My first graduate classroom was assigned on the second floor of an archaic building without an elevator. After a full day of teaching, I drove to the university’s campus to become the student once again. After two weeks, it was simply unbearable; I couldn’t move my legs up the stairs. I remember feeling utterly and completely helpless. I sat at the bottom step and audibly sobbed without caring who heard. It was my breaking point, but not for long. After I withdrew from my class, I underwent my first joint replacement at the age of 29. Throughout recovery, I fought because I knew I was going back the following semester, and I would not stop until I graduated. Two and half years later, I ended my graduate work just as I began with another surgery. I walked across the stage to receive my master’s degree in a sling. A few weeks before, I pulled three wrist tendons during an impassioned lesson on Chaucer’s “Canterbury Tales.” Everyone has their own reality; this is mine. I have fought and continue to fight merely to remain a member of the teaching profession.

Now, after over 25 years in the classroom, many doctors have suggested I stop teaching and apply for disability. It would give my body an opportunity to heal and allow the new biologic drugs to halt the destruction of my joints. Time and time again, I have refused to heed their suggestions. A few times, I have had to scale back and teach part-time as an adjunct instructor, but I have never taken more than my two summer months off. I simply could not fathom a lifetime without a lesson to plan, papers to grade or the opportunity to affect others’ lives. It is the numerous relationships forged throughout those 180 school days that keeps me defying the odds and returning each fall. Of course, my students fuel my passion to create engaging and thought-provoking lessons, but it is those cherished moments outside the classroom that carry more gravitas. Getting to know people from all demographics and empowering them through the power of writing to find their own voice. Being able to give the gift of my time to a student who needs help with a piece of their own writing is deeply enriching.

After all, I believe those who choose to become teachers answer to a greater communal calling for the betterment of society. Despite the low wages, we return each year because teaching is not our job; it is our innate calling. Just as arthritis is a part of me, so is teaching. Somehow the two will have to co-exist within my body. When people ask me what I do for a living, I will smile and simply, yet proudly, say, “I teach.”

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