Should I correct a misunderstanding about a diagnosis?

[bansidhe]

BG: After over a year of mysterious, painful symptoms and numerous doctor's appointments and tests, I was finally recently diagnosed with Inflammatory Arthritis (either rheumatoid or psoriatic - not sure which yet). Quite a few people knew I was having issues so when they ask for updates I let them know what the diagnosis is. I generally just tell people it's rheumatoid arthritis, since most people have heard of that. /BG

Come to find out that although people have heard of rheumatoid arthritis, many of them don't really know what it is. A number of people, upon being told of my diagnosis, have said stuff like, "Oh yeah, I've got some arthritis in my hands" and nodded knowingly. Several have suggested remedies for osteoarthritis and I've had a couple of comments about having so many doctor's appointments and it ended up being "just arthritis."

Now, while osteoarthritis can be a debilitating pain in the posterior (and I've got some of that, too) it's not the same type of thing as rheumatoid arthritis. In my case, for example, my bladder and areas of my GI tract are being affected in addition to numerous joints and it's had a serious impact on my energy level.

When people pretty clearly don't understand the diagnosis, do I explain? Or should I reserve explanations for people who need to know that this illness is having an impact on the way I function (e.g., co-workers I work closely with)?

And if explaining is advisable, any suggestions on how to go about it without
a) making the person feel ignorant, or
b) sounding like I'm saying "My diagnosis is worse than than everyone else's! Neener neener neener!"

Note: Talking about medical problems is par for the course where I work. We're in the health care business and most of us are interested in that sort of stuff.

[sweetonsno]

I guess my main question is this: What's your goal in correcting them? I honestly wouldn't bother if it isn't a need-to-know situation (like you're asking for accommodation of some sort). If they do need to know, then have a quick one-liner ready. "Actually, we think it's rheumatoid arthritis. . . it affects more than just one part of my body." Then, if it's necessary within the context, offer additional details.

If they don't need to know, I'd just acknowledge the sentiment and move on.

[jpcher]

I think that your response to questions on your personal health should solely be based on how comfortable you feel about talking about it.

Personally? I would normally bean-dip conversations like these, but it sounds like it's not uncommon for your group:

Note: Talking about medical problems is par for the course where I work. We're in the health care business and most of us are interested in that sort of stuff.

If you feel comfortable with talking about your condition, then I think you should talk about your specific diagnosis. Such as "My Dr. told me with this specific type of arthritis, I should be doing that in order to treat my pain."

And if explaining is advisable, any suggestions on how to go about it without
a) making the person feel ignorant, or
b) sounding like I'm saying "My diagnosis is worse than than everyone else's! Neener neener neener!"

Keep your knowledge-talk specific to your own diagnosis. ASK others what their Dr.'s have suggested for them. LISTEN to their answers. Talk about arthritis in general, how widely different the disease is and how different diagnoses mean different treatments.

UNDERSTAND what they tell you and commiserate with them about their pain and treatment side effects, etc.

By listening and understanding their talks about the disease in general you won't be doing the "Neener neener neener!" thing. You'll probably gain a greater outlook on the disease itself.

[LazyDaisy]

Can you pick up some brochures from your physician or print a quick synopsis from a reputable internet site that you can hand to people who want more explanation or to give you advice? Sometimes the best defense is a good offense. If you are quick to educate them, cheerfully, they may be less inclined to offer their advice. After all, you've got it covered already.

[WillyNilly]

Well first of all, I think its funny to call it Inflammatory Arthritis  (the suffix "itis" means inflamed - so bronchitis is inflammation of the bronchials, laryngitis is inflammation of the larynx, arthritis is inflammation of the arthos (aka joints), etc).

But on to your issue. I think you could gently correct the "oh I have arthritis too folks" with a friendly "oh well yeah I have a touch of the osteoarthritis as well, but this is rheumatoid which is a whole different ballgame! Its not just the bones its the soft tissue and organs as well." That will gently remind them that A) they are different diseases, and B) give them a bit of a clue to your symptoms - if they know the pain they get in their hands or feet for example they can imagine that same type of pain, but in an organ system like digestive.

[guihong]

Everyone else has good advice, and I wanted to say you may get folks saying something like "Oh, Phil Mickelson!" (the golfer; he has psoriatic). 

For people at work, I like the idea of printing out some brochures, then offering one if someone asks or is interested. 

[Tea Drinker]

Another possibility would be to say "they think I have R.A., it's an autoimmune disease" and not even use the word "arthritis" unless someone asks what the initials stand for.

Or you can bean-dip the suggestions with something like "yes, I'm discussing treatments with my doctor" and "My arthritis is a bit different, but thanks for the suggestion."

[RubyCat]

Another possibility would be to say "they think I have R.A., it's an autoimmune disease" and not even use the word "arthritis" unless someone asks what the initials stand for.

Or you can bean-dip the suggestions with something like "yes, I'm discussing treatments with my doctor" and "My arthritis is a bit different, but thanks for the suggestion."

I like focusing on the fact that its an autoimmune disease.  You might explain a little further that OA (osteoarthritis) mainly affects joints that are subjected to a lot of wear & tear, but RA affects the entire body, maybe even adding that during a flare people can suffer from fatigue & fever to emphasize the systemic nature of the condition.

I hope whatever it turns out to be, that it is something that is easily treated and doesn't interfere too much with your normal life. My mother had RA and she did really well once they figured out what it was that she had.

[kudeebee]

"I was finally diagnosed with Inflammatory Arthritis.  It is either rheumatoid or psoriatic, the doctors are not sure which yet.  It affects my entire body and during flare ups I also suffer from fatigue and fever.  Doctors and I are working on a treatment plan. How was your vacation to xxx?"

I would state what you have from the beginning.  If people ask more questions, depending on the setting and who they are, you can answer them or say you will be glad to talk more about it at another time or bean dip.

[The Wild One, Forever]

Another possibility would be to say "they think I have R.A., it's an autoimmune disease" and not even use the word "arthritis" unless someone asks what the initials stand for.

Or you can bean-dip the suggestions with something like "yes, I'm discussing treatments with my doctor" and "My arthritis is a bit different, but thanks for the suggestion."

I like this answer.  You could be even more vague and just say it's an inflammatory autoimmune disease, without ever having to say the word "arthritis."  (I don't know how well that level of vagueness work in a healthcare business setting, though.)

[Audrey Quest]

Another possibility would be to say "they think I have R.A., it's an autoimmune disease" and not even use the word "arthritis" unless someone asks what the initials stand for.

Or you can bean-dip the suggestions with something like "yes, I'm discussing treatments with my doctor" and "My arthritis is a bit different, but thanks for the suggestion."

I like this answer.  You could be even more vague and just say it's an inflammatory autoimmune disease, without ever having to say the word "arthritis."  (I don't know how well that level of vagueness work in a healthcare business setting, though.)

POD

I would just call it something else.  Like, "I have a chronic inflammatory disease."

[blarg314]

I would probably go with casual but informative. Something like "What I have is actually quite different from 'normal' arthritis, and it has various effects on my whole body. So it can be pretty complicated to treat"

That gives people a heads up that what you have is more than just sore joints as you get older (which can be pretty nasty by itself, mind you), without going overboard at what is actually a fairly understandable mistake. Pamphlets/web sites and so on would be too much unless you're talking about a close family member or friend who really does need to know the details of how it affects you and what the treatment is.

[Raintree]

Tell them you've been diagnosed with an autoimmune disorder that affects the whole body, including joints. Leave the word "arthritis" out of it since so many people will confuse it with osteoarthritis, which is a wearing down of the cartilage in a joint. (And I still can't convince my parents that osteoarthritis is not the same as osteoporosis).

[bansidhe]

I like focusing on the fact that its an autoimmune disease.  You might explain a little further that OA (osteoarthritis) mainly affects joints that are subjected to a lot of wear & tear, but RA affects the entire body, maybe even adding that during a flare people can suffer from fatigue & fever to emphasize the systemic nature of the condition.

Thanks, everyone! I think the above may be the answer for me. When I think about it now, it's similar to the way I explain Feline Leukemia to people who aren't familiar with it and think it's a type of cancer. I say something like "...Feline Leukemia, which in spite of its name is a virus that causes immune deficiency, which in turn can lead to cancer and other illnesses."

Should be pretty easy to say something like "...rheumatoid arthritis which, unlike 'regular' arthritis, is an autoimmune disease that causes other problems in addition to joint inflammation and damage."

I hope whatever it turns out to be, that it is something that is easily treated and doesn't interfere too much with your normal life. My mother had RA and she did really well once they figured out what it was that she had.

Thanks! I'll probably never know what type it is, but it shouldn't really matter much. I'll find out about treatment in April. My aunt has rheumatoid arthritis and my sister has psoriatic, and both of them are managing it well.

[bansidhe]

Well first of all, I think its funny to call it Inflammatory Arthritis  (the suffix "itis" means inflamed - so bronchitis is inflammation of the bronchials, laryngitis is inflammation of the larynx, arthritis is inflammation of the arthos (aka joints), etc).

Heh...I hadn't even thought of that, but it is kind of silly. It must be extra, extra inflammatory.