It’s Not A Contest

One of the hardest things to deal with, after leaving a rheumatologist’s office with a new diagnosis, is the ignorant comments from friends.  Our society lives with the delusion that given any aches and pains, a trip to the doctor will result in a diagnosis and a prescription to make everything right again.  Wouldn’t it be nice if that were how life really worked?

With a new diagnosis, wanting a listening ear and a little sympathy while we try to get our bearings and figure out what happened to our life, it’s distressing to be dismissed with a shrug and insensitivity:

  • Oh, I have that, too, in my little finger
  • Aren’t you too young for that?
  • Just take a Motrin

Recalling those days, I try to be supportive when I meet others facing similar challenges.  I was surprised then, a few weeks ago, by one man’s response.

After shaking hands, I thanked him for not squeezing too hard.  His wife (standing beside him) said, “Well, he has arthritis.”  Guessing that he’s about my age – maybe a bit younger – I asked, “Oh?  What kind?” and was informed that he has polyarticular arthritis.  Thinking to lend a little support, I mentioned that I understand, since I have RA.  He snapped, “Well, mine’s worse!  It’s in every joint.”

I was taken aback.  The online community is extremely supportive of one another, so it was shocking to think I was offering understanding/commiseration and have it thrown back in my face, and also have my circumstances belittled.

Inside I was seething.  How dare he!  What kind of idiot automatically assumes his condition is worse than someone else’s?  How could he remember a long word like “polyarticular” yet not know enough about it to realize what a jerk he was being?  If I were ten years old again, I’d have shouted back at him, “Oh, yeah?  Well that’s not even a real diagnosis!  What ICD-9 code is your rheumatologist using?”  Fortunately, I’m only ten in my head, so I kept my mouth closed and walked away.

Later I started second-guessing myself.  Maybe I’d forgotten what polyarticular arthritis is; maybe I was confusing it with something else.  I looked it up.  Polyarticular arthritis means inflammation of more than four joints.  It’s a symptom, like “sore throat” or “abdominal pain.”  The trick is to figure out the cause, and the differential diagnosis for “inflammation of more than four joints” is a long list of possibilities.  It includes things like parvovirus, Epstein-Barr virus, hepatitis B, HIV, gonorrhea, chlamydia, salmonella, lyme disease, multiple myeloma, plus a host of autoimmune diseases such as rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, scleroderma, Sjogren’s syndrome, and lupus.  It was just what I remembered:  the symptom is inflammation in many joints; the diagnosis says which disease is responsible.*  Obviously, treatment will vary depending on which disease is causing the inflammation.

I feel sorry for the man.  Imagine going through life competing to have the worst disease.  I didn’t know it was a contest.

If it were a contest, it’s one I’d be happy to lose.

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*If the doctor can’t figure out which disease is causing the symptoms, unspecified polyarthropathy or polyarthritis is a possible diagnosis (ICD9 code 716.5 ).

Who’s The Patient?

It’s odd making the transition to observer instead of active-participant in a growing child’s doctor appointments.  I’m accustomed to being the one to provide information when I’m in an exam room with my children.  Kids grow up, though, and things change.

My daughter’s rheumatologist talks to her, not so much to us.  When my daughter shrugs her shoulders and says, “I dunno,” the doctor doesn’t turn to me or my husband for our input; she rephrases the question and pushes my daughter for an answer.

As we sat on the sidelines and eavesdropped while the rheumatologist talked with our daughter a few weeks ago, I reflected back over the years.  Our other daughter was only three when I took her to an allergist.  I remember interrupting him as he was explaining the scratch-test to me, and asking if he would please explain it to my daughter instead of me, since she was the patient.  He looked quite startled and turned his head to look at her, but only got two sentences out before his head gravitated back to me.  He just couldn’t do it.

My daughter’s rheumatologist is definitely different.  I love how she treats my daughter like an intelligent person capable of explaining what’s going on in her body, but it’s weird to not be included in the dialog.

It was interesting, this new way of doing things, when the doctor asked if our daughter thought her prescription was helping.  My husband and I have both seen a difference:  less pain, better appetite, more activity, happier kid.  It hasn’t brought complete pain relief, but it’s definitely an improvement.  We weren’t asked, though.  Our daughter – the person who was asked – wasn’t sure if the medication was helping.

The rheumatologist suggested that she stop taking it.  Give it two weeks.  If there was no change, no need to continue a med that wasn’t making a difference.  If she did notice a difference, then after two weeks a different NSAID might be better.

That seemed like a sensible plan.  My daughter (who hates taking pills) was delighted to have the doctor tell her not to take her prescription and looked forward to her two-week reprieve.  The day after her appointment, she loved not taking a pill with her breakfast.  The following day, she came downstairs and announced dejectedly, “The medicine was helping more than I realized.”

My husband and I recommended that she take her medicine, but she’d heard that she should wait two weeks before making a decision and didn’t want to go against what the doctor had said.  It was Saturday, so we couldn’t call.  Monday morning, first thing, I phoned and left a message.  When the nurse called back, she told me of course your daughter doesn’t need to suffer for two weeks!

The kid even got to pick whether she stuck with the existing prescription or switched.  Of course she stuck with a once-a-day pill instead of going to twice-a-day, but the particular med she’s taking isn’t that important.  The point is that she chose.  She’s the patient, and she’s learning to make her own decisions regarding her health.

Given the awful day she had earlier this week, my daughter came to me and asked if I thought it might help to try the other prescription.  Although I’m tempted to phone my daughter’s rheumatologist, I don’t think it’s time to do that yet.  It was a one-day problem, not a definite worsening of symptoms.  Trying a different medication seems like a reasonable first step.

A few months ago, my dear daughter announced that we could make her go to the doctor now, but once she turns eighteen she’s never going again.  I suspect that was an expression of frustration with the cards she’s been dealt, not her true intention, but I need to realize that it’s not too long until she’ll be autonomous.  She could choose to never see another doctor.  Instead of imposing my opinions and decisions on her, I’m trying to guide her in making good choices (healthcare and otherwise) so that when she has the legal freedom to make her own decisions, she chooses wisely.

JRA

What is JRA?  People sometimes think that Juvenile Rheumatoid Arthritis is the diagnosis when kids get Rheumatoid Arthritis, but that isn’t accurate. Some children with JRA have a disease like adult RA, but most JRA is different than the adult version of rheumatoid arthritis.

The term “JRA” was used in North America in the past (in Europe “JCA” for juvenile chronic arthritis was used), but current terminology is JIA.

There are three main diseases categorized as JRA:

About one-fifth of kids with JRA have systemic onset juvenile rheumatoid arthritis, which in the past has been called Still’s Disease and is now called systemic-onset juvenile idiopathic arthritis. In addition to joint pain and swelling, this type of JRA is noted for high fevers and a salmon-colored rash. The liver, spleen, heart, and digestive tract can also be affected by this form of JRA.

About half of kids with JRA have fewer than five joints affected. Formerly called pauciarticular juvenile rheumatoid arthritis, this is now called oligoarthritis. It tends to affect the larger joints such as knees, hips, shoulders, and elbows. The eyes can also be affected, so referral to an ophtholmologist is important.

Three-tenths of children with JRA have five or more joints affected. This type of JRA is categorized as polyarticular juvenile rheumatoid arthritis. Polyarticular is the form of JRA that most closely resembles adult-onset RA; in some cases it can be identical. The new JIA classification system distinguishes between RF+ and RF- (those whose laboratory tests show a positive rheumatoid factor, vs those whose lab results are negative for rheumatoid factor).

There are other types of juvenile arthritis that are classified at JIA, but didn’t qualify under the JRA criteria.

For more information about the different types of JRA and how they are treated, see: