I Won’t Tell

No, this is not about tattle-tails.

People with RA are often reluctant to tell people. That reluctance is amplified after you’ve done it a few times and been told, “You’re too young,” or “You don’t look sick.”

When you’re wondering whether or not to tell people, here are some factors to consider:

  • Why would the person need to know?
  • Will their knowledge affect your employability?
  • How will you present the information?

Who Might Need to Know?
Obviously your spouse needs to know. Pain and fatigue are common with RA, but if the disease is caught early enough, can often be managed with proper diet and lifestyle. However, RA meds take a while to work (six weeks, up to six months). Until your RA is well-controlled, your ability to do things will be affected. That means that family members with whom you live might need to help with some of the tasks you usually do.

Since there is a genetic component to RA, your parents, children, cousins, aunts & uncles should probably have this information for their own health-history. Presentation matters (something that many of us learn too late).

Telling an employer is iffy. Some people lose out on promotions because their employer thinks that health-issues might affect job performance. Sometimes co-workers told something in confidence prove to be less than reliable about maintaining confidentiality. However, if you will need to miss work for doctor’s appointment, infusions, physical therapy… your boss needs to be told something. Make sure that you say that you want your private medical information kept confidential. The boss is focused on running a business, so I’d make sure that you do everything you can to make sure that your boss knows your work will still get done. Another thing to consider is that some RA medications are expen$ive, which can raise a company’s insurance rates. You don’t want co-workers blaming you for their increased costs. There’s not a one-size-fits-all answer here. It depends on your job, your boss, your work schedule…

Close friends can be a source of encouragement – something we all need. Acquaintances probably don’t need to know, with one exception: some of the people in my church have been a great source of encouragement because they pray for me and let me know it. Still, here, I am selective about who I tell.

In summary, my personal recommendation is:

  • Family should be told – carefully
  • Close friends should be told – carefully
  • Acquaintances should not be told
  • Co-workers should not be told
  • Employers should not be told unless necessary

Why Not?
If you tell people that you have rheumatoid arthritis, most don’t hear the word rheumatoid. All they hear is arthritis.

Arthritis, they think, is osteoarthritis – something that lots people get when they get old.  OA is treated with acetaminophen or ibuprofen, maybe glucosamine.

People will think that you are claiming to have OA, shouldn’t feel as awful as you do, and can just take a few over-the-counter pills to feel better.  People will tell you that you’re too young to have arthritis.

Other people will inundate you with “helpful” suggestions about eating rum-soaked raisins, buying Dr. Frank’s miracle spray, and changing your diet so that you can be cured. You’ll be told that if you’d just lose weight your knees wouldn’t hurt any more (even if you aren’t overweight!). You also might hear about the wonderful faith-healing place you should go to every day, and that if you just had enough faith, God would heal you.

You’ll hear all sorts of horror stories about the dangers of taking medications. It’s amazing how many people believe that medicine is really toxic and should be avoided at all costs.

The fact is that very few people know about RA. They don’t realize that there are over 100 different kinds of arthritis.

What To Say
Avoid using the word arthritis. Depending on the circumstances and the person involved, you can say something to the effect of, “I’ve been diagnosed with a chronic autoimmune disease. It causes quite a bit of pain, and makes me tired all the time. Treatment for this disease is a bit of trial-and-error, but after my doctor finds the right treatment for my particular case, chances are good that I can lead a fairly normal life. I could choose not to be treated, but that would probably result in my being in a wheelchair in five or ten years. I’d really like to avoid medicine, but I would rather be able to walk. So I’ll take my medicine, go to physical therapy, do my exercises, and listen to my medical doctor who specializes in learning about this disease and is doing research to try to find a cure.”

Links for family and friends who show an interest in learning more:

  • The Spoon Theory
  • RA – Family Doctor
  • RA – Mayo Clinic
  • RA – webmd
  • RA – Johns Hopkins