When I was first diagnosed with RA it was a very aggressive onset where I had huge swollen knees (got myself some nice new ones now), red throbbing knuckles and had very stiff movements.
What surprised me the most was how many people I encountered didn’t observe these symptoms until I pointed them out and when I told them I had rheumatoid arthritis they would say I didn’t look sick.
They also didn’t grasp that it was a disease that affected the whole body not just your joints. Rheumatoid Disease is a very fitting description.
Even with such obvious symptoms during an acute flare, my RA/RD felt like an invisible disease and difficult to explain to others.
I understand how frustrating it is to explain to someone you’re feeling tired, sore and in pain if you don’t always have the obvious physical manifestations of the disease.
On Rheumatoid Awareness Day, I’m aiming this blog post at people who don’t have RA/RD. I wanted to highlight some of the innocent or throw away comments (often not made with malicious intent) one might make to a friend, relative or colleague with RA/RD that may cause upset, frustration or induce guilt.
“You’re not much of an early riser are you”
Mornings can be the most difficult time for many people with RA/RD.
Joints tend to get really stiff overnight (especially during a flare) which makes it difficult to get out of bed and get going once one musters up the energy to get out of bed.
Pain and stiffness disturbs sleep patterns so often the person hasn’t had much sleep anyway or they have finally fallen asleep at four in the morning.
“You can’t be too sick if you can go out”
What you don’t see is the preparation that someone with RA/RD might go through for an outing.
Some people rest all day for a night out (this is a necessity not a luxury) and take extra medications to ensure they are fine company and have a good time out.
Often, they spend the next day in bed in pain recovering from even the mildest night out.
“It’s just around the corner”
That may be true however many times “just around the corner” means another 500 metres away.
A person with RA/RD is not being lazy if they are reluctant to keep walking or don’t want to go for a walk.
Walking may be difficult due to fatigue, sore knees, hips, ankles and feet. Sometimes even walking an extra 10 metres can reduce someone to tears (speaking for myself now)
“Are you STILL getting over that cold”
Yes! Many people with RA/RD are taking or injecting powerful medications that lowers their immunity which subsequently makes them susceptible to getting colds, the flu and infections.
“I called you at 7 o’clock last night and you didn’t answer”
Don’t get annoyed if your friend doesn’t answer the phone. That time might be right in the middle of preparing dinner or washing up after dinner.
A lot of people with RA/RD like to finish the task they’re doing if have the energy to do it in the first place. If they get interrupted and sit down for a chat, they usually don’t have the energy to go back to the task.
Holding the phone for long periods of time is also a problem for people with sore hands and wrists. Keeping the wrist flexed in one position can be painful.
Text them first to see if they are available for a chat and don’t be offended if they can’t talk for long.
Facetime or Skype may be an alternative way to communicate when your friend has sore hands.
“You don”t look sick”
This is probably the most common phrase people with RA/RD hear and the most frustrating as mentioned above.
What does sick look like anyway? There are many diseases with no obvious physical symptoms.
I think most people have a cartoonish image of what a sick person looks like. It’s often something they can relate to like having a severe cold or lying incapacitated in a hospital bed.
Often when you catch up with a person with RA/RD, it’s when they’re having ‘a good day’ and they have no doubt gone to the effort to dress nicely and put on some makeup. (It’s amazing how a good concealer can hide those dark eye circles)
If you were drop in on them at home unannounced, you might just find them lying in bed looking tired with ice or hot packs resting on joints fulfilling that stereotypical image of a ‘sick person’.
“You’re so lucky you work part-time”
Most with RA/RD don’t have a choice. They don’t have the physical capacity to work full time because of poor health.
In many instances, they have to give up their job or are medically retired because of severe RA/RD symptoms.
If they could, people with RA/RD would love to work full-time and get a full-time wage. Working half-time means you have half the earning capacity which makes life very difficult for many.
Very sobering recent research shows that having arthritis increases the risk of falling into poverty.
The comments above are real comments that have been made to myself or others I know with RA/RD.
What are some comments people have said to you that have upset or bemused you? I’d love to hear from you.
Info graphics courtesy of rheum4us.org. Check out their site for more great information