I’m ever so thankful that I don’t need a cane, or crutches, or a wheelchair. There’s a chance that’s not a permanent situation, so I’ll enjoy the current stage all I can. As frustrating as it can be for people to have no clue what RA is, I like not having my illness sticking out for all to see. Invisibility has some advantages – except when the invisibility cloak starts to slip.
“Are you okay?” the greeter asked, seeing my slow movements.
“I’m a little sore this morning,” I admitted without further explanation.
“Yeah, you look like there’s a little hitch in your giddy-up,” was his reply.
This concluded our conversation, and I limped on into the building.
“You’re moving kinda slow this morning. What happened?” was the next greeting.
A light-hearted, “I was attacked by my immune system,” seemed like a better response than a discussion of the distinction between adjectives and adverbs, but my attempt to be funny went over the person’s head. She looked at me like I was crazy and wandered away.
A little while later a friend mentioned that I looked a little stiff, and again I replied that I was feeling a little sore. “Did you take anything for it?” she asked. That’s one of the many nice thing about real friends instead of acquaintances; they’ll follow up. I laughed, “Yes, I’m a walking pharmacy.” Of all people to ask if I’d taken anything, it was pretty funny that this friend was the one to do so. We roomed together on a retreat. We’ve eaten many meals together. She’s seen my pill box. Yet she didn’t realize. I guess that means I’ve gotten good at taking pills discretely.
The question is how to remain invisible while promoting awareness. I want to remain invisible. That’s part of the reason I blog anonymously. If I ever need to go job hunting, I don’t want a google search of me to yield any hint of a health problem. Currently, a google-search of my IRL name turns up over two million hits, but after scrolling through page after page after page of links, I realize that people aren’t going to find me without dedicating some time to the task. Nobody’s truly invisible on the internet, but I’m mighty hard to find. I’d like to keep it that way.
I want my illness to be invisible, but RA to be as widely recognized as MS or SLE or ALS.
∞ itis 
I don’t know your age, occupation or living arrangements. However, I can share my experience. I’m now 68 (lots of experience) and am retired (I quit my last job 13 years ago because it was the pits, and because I was hurting too much and had too much fatigue to walk from the handicapped parking the equivalent of 4 city blocks of buildings and hallways to my office (it really was the closest parking space). My job required shoving computers around as well as compiling and analyzing statistics. It was the walk and the shoving of computers that got to me. Not to mention having to walk nearly 1/2 mile to the cafeteria to eat. I SHOULD had taken disability, but instead I became a consultant.
So, this consultant’s advice (worth what you pay for it) is to be upfront about your RA. You can’t expect to have anyone accommodate you if they don’t know about your RA.
My mother had RA and worked for a large, international corporation with a reputation of being “cold.” She was accommodated, given a special parking place (the president of the corporation gave up his space for her!) and was kept on the payroll through 36 orthopedic surgeries in 8 years. No retaliation, no cutting of pay. They took care of her.
My experience with my fibro and RA is that I was accommodated in each of my positions. I was covered with insurance, and had no problems with it. So My suggestion is that perhaps you need to reconsider the risks versus benefits in terms of being more open about your RA.
You have a very good point. I have tried to be a little more open with people I see regularly, but making the information public is where I hesitate.
When I worked, my employers were always very happy with my work and willing to bend over backwards to accomodate me if it meant I would continue working for them. If I’d been employed when I was diagnosed, I’m sure there would be no problem juggling my career around my medical needs. Accomodating an existing employee whose work you know and like isn’t the same as taking on a new employee who might or might not work out, and who is going to need regular time off for doctors’ appointments. I know I’m not up to working 70 hour weeks like I used to.
I see that my “About Me” page doesn’t say too much about my living situation. Nearly sixteen years ago, when my first child was a year old, I “retired” from paid employment so that I could work without monetary compensation (rear my children). At that time, we lived in Seattle, half a block off Greenlake. We didn’t want to raise kids in the city, so moved. We now live in a two-story house on 20 acres. I homeschool my five children. It’s the hardest job I’ve ever had, but I can juggle my schedule as much as needed, I have help, I can take naps if I need to…
You’ve given me some food for thought. Thank you.
I understand your concern about employers perhaps rejecting you for employment because of medical bias. It’s a real issue. Employees with chronic illnesses often have to take more time off work, either to see doctors or because they’re feeling too ill to be at their desks. And with employer-provided healthcare insurance, the concern might be related to possible higher costs for everyone because of the chronically ill employee. It’s not fair, but it’s reality.
I was lucky in that when I was diagnosed with RA, I was already employed, and that my employers were willing to bend to accomodate my needs (within reason) as long as I was able to do the job they’d hired me to do. I did. Today, I’m less sure of that sort of compassion and flexibility among employers.
As far as “invisible” goes, I feel your pain (heh) when encountering others when I’m gimpy and stiff. People ask out of curiosity and compassion, but they don’t really intend to get into a detailed conversation about the reason I’m limping. “I’ve got rheumatoid arthritis and my ankle is flared” seems like a simple answer to me, but to the questioner, it’s like greek. Sigh. And yet when I see the same people, often, and last week it was an ankle, and this week it’s a shoulder, it’s easy to start feeling embarrassed.
I’m not sure what the answer to this one is, Socks. I guess we just keep on doing what works and hope for the best.
Here’s hoping you’re feeling well (and your daughter, too). Hugs… 😉
I’m okay, thank you. Daughter is feeling better.
Do your joints really take turns flaring? Mine are more inclined to throw a big party. (sigh)
The casual “how ya doin'” gets a generic response, because most people don’t really want to know how others are doing. It’s just those who I see frequently and seem to genuinely care that get a peak into what’s going on. I never say the “A” word, because that’s just asking to be misunderstood.
Employers do search for info on applicants to learn much more than a resume’ ever shows. Between Facebook/MySpace, twitter, and google, it’s possible to learn quite a bit about a person. I try to be careful what shows up online under my name, because someday I might need to look for a job.
This is a funny balance we try to talk…between not drawing attention to ourselves by being like everyone else (“normal”) and making people aware of RA.
I laughed at your “attacked by my immune system” quip. I’ll have to use that one!
😀 We’re all working on finding that balance.
Hope you find quick, effective treatment for your ankles.
At holidays, I find it easiest to slip into another room or bedroom to take meds when dinner has been announced-people are already gathered or headed the other way, and you can take them right before you eat.