What to Expect when Expecting RA, Part 1
Lately, it seems like we have had a huge influx of patients who have just been diagnosed with RA and other related illnesses. Maybe this is because the testing tech is getting better or maybe the Goddess of RA saw what was happening with COVID and said, “I’ll show that Coronavirus!”
But either way, more people seem to be entering that most overwhelming and confusing of times – diagnosis. So, in order to help guide new patients through this particularly difficult period, we’re going to go over some of the things you can do when first diagnosed.
Staying calm during the RA diagnosis journey
First things first - don’t freak out! (That’s a medical term). Look, I know right now you are getting so much thrown at you that you feel like an elementary school lunchroom monitor. In addition, you have no idea what’s going on with your body, and each day something else seems to go wrong.
Finally, every Tom, Dick, and Sally you know turns into a flim-flam snake oil salesperson who has the tonic you need for aches, pains, rheumatism, gout, flatulence, trick knees, baldness, bad humors, and halitosis. Just 19.99 a bottle! (No, I don’t want to sell Herbalife, Charlene.) You barely get through one set of tests and doctor’s appointments before you are back at the physicians once again, getting a new slew of bloods taken and scans made. You probably have had enough x-rays in the past month for that slight glow you now exhibit to classify you as an “amateur lighthouse,” and you’ve been jabbed by more needles than Keith Richards (sorry Keith, keep on rockin’ man).
You are fed up, confused, and sick of doctors asking you more questions than you ask them. Well, fear not, because all of this is noise and there are a few things you can do to survive until the end of the beginning.
Record your doctor visits
This is something I wish someone had told me when I started my RA journey: use your cell phone to record the sessions with your doctor. (Yes, I know they didn’t have cell phones when I was diagnosed 30 years ago - don’t bother hitting send on that Tweet.)
Digest the information at your own pace
This has two benefits – first, it allows you to go back and digest the information at your own pace while looking up anything you don’t understand. Now, I’m definitely not suggesting you suddenly turn to Dr. Google for all your RA needs. In fact, I’m saying, DON’T turn to Dr. Google for all your RA needs. He has horrible breath and his co-pays are ridiculous. Ha! But seriously, if you have a recording of what the doctor says, you can go through it as many times as you want and really get a handle on what’s what.
Capture important information you may miss
Second, as mom always used to say, “two sets of ears for every visit,” by which she meant always bring someone to the doctor's appointments because two memories are better than one. With modern tech the way it is now, though, that’s not necessary any longer. The voice recorder makes sure you don’t miss anything. Besides, it worries a lot less than a mom recorder.
Talk to others diagnosed with RA
The second thing you should do when you are just diagnosed is talk to people! By this, I definitely mean stop randos walking down 5th avenue and say, “Excuse me, fine sir. How would you like to discuss my rrrrrrrheumatoid arthritis?” (*Make sure you really roll that “r”; people might think you’re weird if you don’t.) No, of course, I don’t mean that! I mean go to places like RheumatoidArthritis.net and ArthritisFoundation.com and find your peeps! Find others on websites and Facebook groups that can help support, comfort, and inform you about your illness.
There will be moments of loneliness
Family and friends are great, but no one truly knows rheumatoid arthritis besides the people who live with it, day in and day out. I have seen so much compassion and great advice given on these sites and pages that it warms my heart on a daily basis. And trust me, there will be times during the diagnosis period when you feel totally alone. You’ll feel like no one could possibly get what you’re going through, and you’ll feel guilty for making a fuss about your pain and discomfort.
These are all normal things that happen to everyone, trust me, and it makes it better to know you aren’t the only RA patient in the world who ever experienced these things. I know it sounds trivial but take my word for it – it’s oddly comforting to know you aren’t the only person suffering horrible pain and swelling at the moment.
Be prepared for many diagnostic tests
Next, there are some practical concerns, and I doubt we’ll get to everything in one post (that’s why this is called “part 1” and not “whole thing”). Just know that every part of you is going to be poked, prodded, stuck, sliced, diced, and made into julienne fries until they’ve run every single test known to man related to autoimmune illness. It’s just one of the facets of life when living with an autoimmune illness.
Doctors love to test the hell out of it, and the fact that the result of the “RA” test, positive or negative, has no bearing on whether or not you actually have RA is just a little cosmic bit of humor laid on us by the Goddess of RA. Heck, they’re probably going to do tests on you that you never even heard of, but this is all, unfortunately, totally normal.
As I've said, I didn’t think we’d fit the whole thing into one post so in part two we will cover more of what to expect when you are newly diagnosed with RA. Things like medications, symptoms, etc. - you know, the juicy stuff! So, stay tuned and keep an eye out for the next segment. It won’t be long. Talk soon.
When was your last flare?