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
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    Initial Consult – Part 2

    What should a person expect at their first appointment with a rheumatologist?  Prior to the appoinment, there’s quite a bit of paperwork – that’s covered in part 1.  Both of my the rheumatologists mailed the paperwork to me to complete beforehand, with the promise that my exam would be cancelled if I arrived without the paperwork.  Fair warning – that paperwork is important.

     

    Arriving half an hour before your scheduled appointment is frustrating.  The doctor really isn’t keeping you waiting, though.  First all your paperwork is placed into your new chart (or, I suppose, rushed through data entry if the office is computerized).  Then the doctor takes time to review your information before meeting you.  Finally, then, it’s time for the exam.

     

    Physical Exam

    When you’re taken to the exam room, the doctor should review the paperwork with you, clarifying and confirming the information you provided.  Based on that info, the doctor will have ideas about your possible diagnosis.  He’ll ask you to clarify anything that’s not clear and likely scribble little notes all over your paperwork.  Then he will examine the body parts that you’ve indicated are a problem.

    Your referring doctor should have sent a copy of recent lab results, and the rheumatologist will review them.  Most likely you’ll have your blood drawn again, and the RD will order additional tests.  It’s probably a good idea to ask the technologist who draws your blood to please send you a copy of the results (you’ll need to sign a release).  If your eventual diagnosis results in an ongoing relationship with the rheumy, you’ll be getting lots of bloodwork, and it might be nice to have your own file/notebook with all the reports.

    At your initial appointment, you’ll probably have x-rays taken (many rheumatologists employ an x-ray tech and have a machine in the office).  X-rays will show if structural damage has already occurred, and these pictures will be used as a base-line to determine whether future treatments are effective (the goal is no new damage).

    X-rays don’t show inflammation; they only reveal whether damage has already occurred.  MRI is more effective than x-ray in showing what’s currently going on, however this technology is expensive and many insurance companies won’t cover it.  It’s probably not a good idea to introduce yourself to a new doctor as someone who’s going to be a demanding PITA.  Just go along with whatever tests the doctor orders – at least this first time – unless there’s a compelling reason to do differently.

     

    Once the exam is complete, your doctor should have an idea of what your diagnosis is.  However, that is not always the case.  Sometimes the rheumatologist can tell that there’s something autoimmune happening, but be unable to distinguish exactly which disease you’re dealing with.  Since many types of arthritis have identical treatment plans, an exact diagnosis isn’t always necessary.  We WANT to know what’s wrong, but it’s more important to begin treatment. Given time, the right diagnosis will appear.  Trust your doctor, and work with him.

    More information about what to expect at this initial appointment can be found in a thread pinned to the top of the Arthritis Foundation’s RA Connect forum.

    Initial Consult – Part 1

    What happens when you get sick and your doctor refers you to a specialist?  Sometimes you feel like you’re the ball in a pinball machine, bouncing this way, then that.  “Go here for this test, there for that test, then see this doctor who will send you somewhere else for more tests.  And here’s a referral to another doctor who will want more tests.”  

    It’s frustrating!  If it will help you to know what to expect when you’re referred to a rheumatologist, read on…

    A rheumatologist will schedule 1-1/2 to 4 hours for your initial appointment – ask when you make your appointment how long you should expect it to take.  Get a babysitter, if you have children. This is too long an appointment for your kids to have to be at the doctor’s office with you.

    Paperwork
    When there’s a lengthy waiting period between your PCP’s referral and your initial appointment with the rheumy, you can request that the office mail the paperwork to you.   You’ll be happy to not have to rush through it in the waiting room. (Tip:  If you take the extra time to type your answers on the paperwork, the doctor’s front-office staff will be thrilled to not have to try to decipher your penmanship.)

    A rheumatologist needs tons of information to make a diagnosis – that’s probably true of any doctor.  If you’ve never compiled a detailed medical history, now is the time.  Once you’ve done it, you’ll never have to search for the information again.  It’s worth taking the time to do it right.  It took me days to gather all my information – I even wrote to aunts, uncles, and cousins for the big picture (and learned that there is a history of a few genetically-linked diseases in my family, but nobody had been telling anyone else about their doctor’s appointments).

    I’m on my second  rheumatologists. There’s very little that they didn’t both ask about, and based what others have indicated, it appears that other rheumies want similar information:

    Basic Info
    Name, address, date of birth, and insurance information are obviously required. The RD will also need to know who referred you (not just because doctors get paid more for a consultation than for patients who decide on their own who to see). I highly recommend including your referring doctor’s complete name and address. If you say “Dr. Doe” your records might end up at any Dr. Doe’s office. If you say, “Dr. John A. Doe, Greatest PCP Clinic, 1234 Main Street, MyTown” there’s more chance of your referring doctor actually receiving a report.

    Symptoms

    • Briefly describe your present symptoms
    • Approximate date symptoms began
    • Diagnosis
    • Previous treatments for this problem, excluding medication (physical therapy, surgery, injections)
    • Do you have an orthopedic surgeon
    • Other doctors you have seen for this problem

    Social History/Household

    • Marital status, number or people in household, their ages
    • Occupation? Number of hours worked per week?
    • Do you live in house/apartment
    • Do you have stairs to climb? How many?
    • Who does most of the housework? Shopping?
    • Are you receiving disability? Applying?
    • How many cups of caffeine per day?
    • Alcohol use/amount? Tobacco use/amount? Street drug use/amount?

    History – Biological Father/Mother/Siblings/Grandparents
    (If something significant shows up in cousins, I’d make a note of that, too)

    • Cancer
    • Seizures
    • Stroke
    • High Blood Pressure
    • Anemia
    • Kidney Disease
    • Alcoholism/Drug Addiction
    • Asthma
    • Gout
    • Lupus (SLE)
    • Rheumatoid Arthritis
    • Psoriasis
    • Tuberculosis
      Leukemia/Lymphoma
    • Blood Clots
    • Heart Problems
    • Bleeding Tendencies
    • Kidney Disease
    • Diabetes
    • Goiter
    • Colitis
    • Ankylosing Spondylitis
    • Arthritis
    • Osteoarthritis
    • Osteoporosis
    • Other

    Personal Medical History

    • Date of last tetanus shot
    • Date of last pneumovax
    • Date of last TB test
    • List previous operations type/year/reason
    • Do you have a history of any of the following illnesses: Cancer, leukemia, lymphoma, seizures, epilepsy, bad headaches, stroke, blood clots, cataracts, pneumonia, asthma, diabetes, arthritis, rheumatoid arthritis, osteoarthritis, childhood arthritis, psoriasis, osteoporosis, heart problems, stomach ulcers, colitis, rheumatic fever, kidney disease, lupus, ankylosing spondylitis, jaundice, nervous breakdown, gout, goiter, gonorrhea, syphilis, herpes, Chlamydia, HIV/exposure, fractures, other significant illness or arthritic conditions

    Medications

    • List present medications, dose per day, taken since (date),   Helped: a lot/some/not at all
    • Past arthritis medications (lists of otc, nsaids, dmards, biologics, and narcotics – mark those that you’ve tried)
    • Allergies: medication/reaction

    System Review
    This means that the doctor looks at how all the systems in your body are working:  eyes, ears, nose, mouth, throat, neck, stomach and intestines, blood, kidneys and bladder, heart and lungs, muscles/joints/bones, skin and hair, nervous system, general…

     

    Knowing the background that the doctor will ask about should help you be prepared to complete the lengthy paperwork required for your first appointment with a rheumatologist.  This post was getting too long, so the physical exam is covered in my next post.