Top 10 Challenges of Living with Rheumatoid Arthritis as an Invisible Illness

Leslie Rott Feb 9th, 2016 (updated Jan 12th, 2017)
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Woman standing by a small body of waterWhile some people with rheumatoid arthritis (RA) have evidence of visible illness, many of us do not. You cannot see the scars, both physical and emotional, or the swollen joints that we hide.  Here are some of the challenges of living with RA. (All images credit: Thinkstock)

 

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“Only old people have arthritis”
“Only old people have arthritis”

When it comes to RA, most people associate arthritis with getting old.  But anyone can get RA at any age.  Because RA can be invisible, people only associate it with people who have visible deformities, such as the elderly.

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“It’s all in your head”
“It’s all in your head”

Because RA is invisible, even medical professionals can fall into the trap of disbelief regarding RA. This can lead to self-doubt for the person with RA, especially if you have pain but little inflammation, or if you are seronegative, that is if your rheumatoid factor test is negative.  For many with RA, this means that diagnosis takes longer and can result in irreversible joint damage.

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Education is exhausting
Education is exhausting

Just as doctors can be skeptical because RA is an invisible illness, others in our life can, as well. We are forced to defend ourselves against those who don’t believe we are sick, and have to constantly educate other people, which can be exhausting.  At its most frustrating is that we have to educate those who are close to us, who often doubt us as much as, if not more than, strangers.

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Fatigue is not just about being tired
Fatigue is not just about being tired

Many of us with RA struggle with mind-numbing fatigue that we cannot fight against.  When this fatigue hits, we have no choice but to succumb to it. 

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“I feel like I’ve been hit by a truck”
“I feel like I’ve been hit by a truck”

Not only is the joint pain, stiffness, and fatigue of RA invisible, but so too is the general feeling of being unwell that comes with RA.  Many with RA feel like they are constantly under the weather, or constantly about to get sick.

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Pain is real but might not be constant
Pain is real but might not be constant

RA symptoms can ebb and flow, and is often characterized by flares, or a sudden onset of disease activity that can be totally debilitating. Those of us with RA don’t know how we are going to feel one day to the next, and this can be hard for people to understand when we have to cancel plans at the last minute. 

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Handicap parking
Handicap parking

Because RA is invisible, people who use handicap placards for parking may be harassed when other people who see them do not believe they are disabled. 

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Disability
Disability

Many people with RA also struggle to get on disability because while they are physically unable to work, they may look well enough to do so.

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“You’re just fat”
“You’re just fat”

Many of us with RA require steroids as part of our treatment.  While our illness may be invisible, the way we look as a result of our treatment is visible to others, for instance with the moon face caused by steroids. Because these may be the only outward signs of illness, people might mistake this for just being overweight and suggest that our illness would be cured if we just lost the weight.  

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To disclose or not to disclose
To disclose or not to disclose

The invisibility of RA and lack of understanding can be isolating and creates an emotional burden when we struggle with whether or not to disclose that we are sick. Those who have had negative experiences with this are less likely to disclose, causing a vicious cycle of hiding illness and feeling alone.