How Those With RA Can Help the Newly Diagnosed
I have seen a lot of posts lately where people are asking for remedies for their RA pain, and that’s totally normal. The pain of rheumatoid arthritis (RA) is awful and debilitating, and despite the fact that most people think all arthritis is the same, the simple fact is that every person’s RA is as unique as their fingerprints. What works for one person may or may not work for another, wholly or in part. For some it’s heat, and for some it’s ice, but whatever it is, chances are you won't have the same experience as the patient next to you at the infusion station.
Pain management is sometimes trial and error
Heat. The heating pad. It works for me sometimes when my RA acts up. Other times it’s cold that helps. Ice packs. Even more times, neither works, and I have to resort to meds and rest.
The fact is, there is no surefire way to alleviate the pain of RA — the only way to figure it out is trial and error over a long period of time, and then you can decide for yourself what works and what doesn’t.
Unfortunately, this is not what many who are recently diagnosed and are currently suffering horrible pain want to hear, and I don’t blame them.
Trying different medications to find what works
Unfortunately, treating an autoimmune illness like rheumatoid arthritis often involves your doctor giving you a medication, and then you... get on your knees and pray it will work. Really, it’s basically, "Try this, and let’s keep our fingers crossed!"
Oversimplified, but the reality isn’t much different. Truly! The most painful part of RA is often when you are first diagnosed, because it can take years of suffering through hurt and fatigue while you try different drug combinations until one works long-term, and that can take more than a year.
Personally, it took me almost 20 years to find a drug that worked for my RA, and by then, the damage was done (but that’s a story for another post). The point is, only those of us who have been dealing with this illness know how very long every single thing takes to get done, and no matter how we try to explain it to those newly diagnosed, it rarely sinks in.
Have patience and expect the unexpected
So, really, what can we do to help those who have just started their journey with rheumatoid arthritis and autoimmune illness?
Well, first and foremost, I think patience is the order of the day. Now, look, I’m the last person who should be preaching patience. I am probably the least patient person on the face of the Earth. I once bought something at 3 times the price on eBay just because I didn’t want to wait 3 more days for it to be in stock locally. Three days. Seventy-two hours. Three times the price. Yeah. Patience and me are about as friendly as 2 opposing presidential candidates.
The thing is, many of those recently diagnosed have no idea what to expect, and not only do you not want to scare the heck out of them with horror stories, but you also don’t want to overload them with information. My suggestion is to tell them to expect the unexpected and reassure them you will be there when and if they need.
Giving others a place to start
In addition, when they inevitably ask, "What do you do for [insert body part here] pain?" my suggestion is just to tell them what you do. I know I literally just said above that what works for 1 person may not work for another, but, really, even if it doesn’t work for them, they have to start somewhere, right? Why can’t they start with what you do? It can make for an easier transition and help put their mind at ease.
Just make sure you are there for the inevitable ensuing questions and/or complaints. As long as you aren’t going to just leave them with a heating pad and a hearty handshake while you fly off to Tibet, it really is fine to give them a place to start. Ultimately, it's helpful to keep in mind what you went through when you were first diagnosed and try to do things to make it easier for them.
It takes time to adjust to living with RA
Why are we even talking about this, you’re probably (finally) asking? Well, because when you have an illness like RA, chances are good that you are going to meet someone else with that same illness, so it’s always good to have some of this information in your pocket and ready to go.
If you take away nothing else from this article, just remember to be patient. RA is a long-term illness in all respects, and that takes anyone time to adjust to. Talk soon.
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