Maybe you want to tell. Riding the emotional ups and downs of arthritis can be easier when you talk about it with family, friends, and even co-workers; some may be able to offer arthritis help and advice. Maybe you don’t want to tell. You may fear you’ll be treated differently once people know you have it, or you may simply dread the question, “What is arthritis?”
Alex Shikhman, MD, a San Diego rheumatologist, says the majority of his patients opt to stay quiet about their arthritis in the workplace for fear of it adversely affecting their job status. “They worry that they will get discriminated against at work and that it will affect their health insurance premiums,” says Dr. Shikhman.
Several factors can influence people’s openness, including what type of arthritis they have, how severe it is, and what their social environments are like, says Mark Lumley, PhD, a Detroit psychologist whose research has explored disclosure of secrets and how this affects mental well-being. Working with arthritis patients, he found that those with a more common, more socially understood disorder – osteoarthritis, for example, as opposed to fibromyalgia – tend to disclose more often.
To explore how this personal decision can play out in everyday life, Arthritis Today asked three people to share how they told others. Read their stories – and what psychologists have to say.
Sally
At age 25, Sally* is a successful public relations and marketing manager in Charlotte, North Carolina, who doesn’t let her rheumatoid arthritis (RA) stop her from running, biking and playing tennis. “I’m pretty athletic. I played three sports in high school and field hockey in college,” she says.
Diagnosed at age 20, Sally experienced periodic flares for a couple of years but is now enjoying a remission. “I have it in my small joints: fingers, wrists, toes, elbows. Every now and then I have a flare and my toes will be stiff, or one finger is really irritating,” she says.
Sally finds the arthritis help and support she needs from telling only family and close friends, including her boyfriend of five years. Beyond that, it’s just easier to keep mum about her condition when she’s around most other people. “It isn’t something I want to broadcast,” she says. “I just don’t want to be judged differently.”
Thankful that her arthritis is manageable at this point in her life, Sally feels all the more confident of her decision not to share her condition with her boss and co-workers.
“It’s not necessarily that I am hiding it from them. If it came up, I would be open and talk about it. But it’s not something I am going to go out of my way to tell them about,” she explains. “I don’t want a stigma attached to who I am in the workplace.”
It's rather frustrating really not knowing..It feels more like the rhuematologist has taken a guess because there are no answers left. This is why I choose not to take any medication. Trust me I'm paying for it. My 6 year old son asked me to have a running race with him the other day. I explained to him why I couldn't and suggested a fast walking race instead (he does know that mummy is not well and can't do certain thing). Only then did I realize how bad my body is being damaged from whatever it is i have. I only just finished the race and I was aching from head to toe. I struggle daily with the physical pain in my knees, hips, shoulders and hands mostly as well as the emotional effects. Some days I think I've dealt with the fact that my life has changed forever but others I still can't seem to get a grip on the fact. It really is a roller-coaster ride. All I want is definite answers...I think that may help with the healing process emotional wise. If your wondering why I don't take any medications It's because I don't see the point when apparently there is nothing wrong with me...well there's no physical evidence anyway. What If I take the medication for RA and I find out it's actually not RA? I will be poisoning my body for no reason...not to mention the side affects sound terrible!! So for the time being I'm opting for the natural remedies. I take Salmon oil, green lipped muscle, bee pollen and cherry-vite capsules everyday and I drink green tea. These do seem to make a slght difference as I have noticed when I stop taking them the pain levels increase.
All I really want to say is, that my heart goes out to people who are dealing with arthritis as there are a lot people worse off than me. You guys deserve so much respect for what you must put up with everyday and Its hard sometimes when people don't show that they care. Like Becca said People don't "get it" if they haven't experience it themselves.
I hope to have a proper scientific diagnosis someday soon even if it is RA at least then I can genuinely say I'm apart of the club.
I also have heart and lung problems, since childhood. So no surgery will ever be done. I have had flares where the only joints not affected were my little fingers. I have managed to work as a nurse, be in the military and raise 4 children. Most of the time I didn't tell anyone unless I absolutely had to. Now I ride a scooter so most people asume I have arthritis. But when I stand up or walk a few steps I get the impression they think I'm excagerating.
I was glad someone said something about walking and her knees and/or hips giving out. I have prevented a number of falls by uing my cane and holding on to a bannister when my hips or knees gave way.
By the way I did benefit, a Lot from having the shots in my knees.Not the cortisone but the "chicken stuff". I was told it wouldn't be any help in my walking but it sure did help with the pain at rest.
I have had the symptoms for years and thought maybe it was just regular arthritis.
Told the doctor about it, but wasn't concerned that it may be the start of RA.
Just these past 9 months though, I have hit the bottom of the barrel.
I cannot move my fingers when its active and its very painful 90% of the time. I have no medical and have been laid off, so my resources are limited in getting help.
I have been to a Rheumatologist and he advised that my fingers and toes already show damage from the disease.
Some days it is hard to walk, type and even eat.
I have lost 18 pounds as a result. Now weight at 99/100 pounds.
I am 31 years old and have 4 children.
Because you cannot see the disease but maybe the swellign..when its bad, most people are not very sympathetic.
People advise me to keep on moving and "don't be lazy".
Trust me, I can't be lazy with 4 kids. The pain is so bad that I've weakened teeth from gritting them hard in pain from "getting up and moving".
People don't "get it" if they haven't experience it themselves.
My future with this is worrisome. I am not able to get the treatment I need, so I endure the pain and slowly watch my body succumb to the disease. Of course depression is setting in as I am angry that I am unable to do as much as I used to or with great difficulty.
Its embarrassing when your in your early thirties and people 20 yrs older than you can walk up a flight of stairs no problem.
Not enough working credits for Disability due to being a housewife 4 x's for the kids, praying for SSI to be granted. Maybe then I can afford at least something more than Tylenol to treat this.
Keep me in your prayers, I don't have a support system and family to aid with children. Also live in very rural area.
Thx
Now however I am faced with my first knee replacement and the time off and the help that I need is going to demand an explanation. I still don't want to tell my work, or anyone else. I'm trying to think of a covert way of explaining the situation. Besides my knees I do pretty well, and I hope after this replacement I can savor a little more normalcy, if not quality of my life.
So I don't know if I did more harm than good by not telling. I could certainly use more support for this procedure, but after I recover I would prefer to go back to not having my illness be a part of my identity and especially not the stigma that goes along with it.
If you DO anticipate disability as a result of something like arthritis, however, it's best to notify your employer, so they can make accommodations for you, under the law. If you do NOT say anything, then they are not legally obligated to do so! As for family and friends, it helps to have them talk to an expert, such as a doctor, to tell them what you are going through, particularly if you will need them to take over some of your responsibilities, even for a while.
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