When JA Affects My Body Language

When JA Affects My Body Language
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A couple of my friends are dying to play poker with me — not because I’m good at the game, but because I do not have a poker face at all.

My expressions are a dead giveaway. You can almost always tell what mood I’m in based on the look I’m giving. Or, so they think. Having grown up with juvenile arthritis, I’ve had to learn a thing or two about concealing how I’m feeling, including how to smile through the pain.

I think most people with arthritis learn to hide their pain well, especially when it begins in childhood. They’re able to go to school, work, and do activities while others often don’t bat an eye.

But there are times when enough is enough, and the pain and the fatigue show, such as toward the end of a busy school day, in the middle of a wild birthday party, or on the first couple days of a flare. But even then, the way the pain visibly affects someone might not be overly obvious. For example, instead of crying, their body language may become more closed off, expressions may be less pleasant, and tones may completely change. This can be very subtle or quite dramatic, depending on the person and the severity of their pain.

If arthritis leaves me feeling like I suddenly got hit by a train, the way I carry myself does a 180. My slight limp will become more pronounced, to the point that I’m dragging myself around as if everything is an effort. My tone can vary unintentionally depending on what type of pain I’m experiencing; I can sound hoarse, irritated, or highly emotional. Additionally, I can start to look very stiff and also get shaky, which can make me appear nervous or unwelcoming to others.

I honestly do try my best to look relaxed, and I’m cautious about my tone, but it is obvious I’m uncomfortable. Even while trying to wear a smile, my eyes are probably screaming, “I would like to crawl out of my skin right about now.” It can be hard to give a good impression when the pain is overwhelming.

The wrong impression

I don’t feel my change in demeanor is entirely a horrible thing. It’s natural to react to pain — even chronic pain. As a small child, it helped clue my family in to my needs and how my condition was. Even now, I appreciate that family members and friends can look at me and just know what I’m feeling.

The real issue for those with chronic pain tends to be that this change can leave the wrong impression on others, especially those who aren’t aware of our struggles. Pain can cause you to act cold and distant, angry, lethargic, or just not yourself. 

As kids get older and grow into adulthood, they need to find ways to cope with this, especially during interviews, parties, weddings, and other significant social events. It can mean becoming acutely aware of your body language and finding ways to position yourself that are more comforting and appear welcoming. It can also mean making a very personal decision to reveal your diagnosis to someone to help them understand that you’re not cold, you’re just in pain.

If I have an event where I need to be my very best, I time my medications for the day. I try to take any pain-relieving medications about an hour before the event to allow them time to work. Even if I’m feeling good that day, I still take my medicine, because it’s easier to prevent pain than to relieve it later. During the event, I keep my eye on the time and make sure to take another dose on time. Although it’s not a cure-all, it does tend to help.

Learning who to keep

Sometimes, it’s impossible to hide the pain. For me, one of the least expected outcomes of this became one of my biggest blessings: I met and became friends with very empathetic people. I grew very close to people who would walk in the back of the pack with me, who would reach into their purses and hand me their bottle of Tylenol, and who would seek me out to check if I was OK. Being so visibly in pain makes me feel vulnerable, so it helped to be treated with kindness and gentleness by others. 

While I still do my best to put on my best act around strangers or at events, it’s comforting to know some others can see past the act and want to help. Knowing I have a friend close by calms me, which in turn can help me appear more relaxed. Kids, teens, and young adults with arthritis go through so much every day to lead normal lives, but having someone they feel safe to be themselves with can ease the burden tremendously.

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Note: Juvenile Arthritis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Juvenile Arthritis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to juvenile arthritis.

Elizabeth Medeiros is a young adult who has dealt with juvenile arthritis since she was a small child. However, her pain hasn’t stopped her from working on a product design degree in Boston. Her passion is to create products that make life easier for the chronically ill, such as shoes and walking canes. When she’s not in class, Elizabeth enjoys writing about how she’s coped with arthritis at such a young age. You can find more of her writings at ArthritisGirl.Blogspot.com and on Instagram @GirlWithArthritis.
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Elizabeth Medeiros is a young adult who has dealt with juvenile arthritis since she was a small child. However, her pain hasn’t stopped her from working on a product design degree in Boston. Her passion is to create products that make life easier for the chronically ill, such as shoes and walking canes. When she’s not in class, Elizabeth enjoys writing about how she’s coped with arthritis at such a young age. You can find more of her writings at ArthritisGirl.Blogspot.com and on Instagram @GirlWithArthritis.

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One comment

  1. Colleen Steele says:

    Thank you for writing this column. This is such an important topic and one that I think so many battling various disease can relate to. My son battled a rare disease for 5 years then received a transplant. He knows what it’s like to try to be social while fighting though pain. I can also relate because I struggle with RA. Thank you for bringing this to the attention of others and for the suggestions on how to cope.

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