Rarely a day goes by on social media when I don’t see a post and corresponding long thread of comments related to a)other people not understanding rheumatoid arthritis, b)what you should say to someone living with RA, and c)what you shouldn’t say to someone living with RA.
Now don’t get me wrong, I understand firsthand the frustration that results from people not knowing the reality of what it’s like to live with this disease, and I’m not saying these conversations shouldn’t be taking place. I know how much it can hurt when love ones don’t provide the support we might be seeking. And I know how much it can sting when other people miss the mark during their attempts to try to offer advice and suggestions.
I know it’s important to release and work through these feelings. For years I too banged my head against the wall when it came to reacting to all of the above. But at a certain point, I realized that is exactly what I was doing.
I was banging my head against the wall.
I wasn’t working through these feelings. I was just repeating them, and feeding my anger and frustration. And in so doing, I was giving these non-productive feelings precious time and energy; time and energy that I could have be dedicating to something else. I wasn’t helping myself any, and I more than likely wasn’t encouraging others to try to come around and gain the understanding that I so desired. (I don’t know about you, but I know of very few people who decide to “jump on board” after being berated, whether they were in the right or in the wrong…)
Once I stopped to analyze my reactions, and not the actions of others, I started to learn a lot about myself. In a blog post that I wrote at the time, I thought out loud: “I finally had to wonder to what extent my original angry reactions were just a way to avoid confronting certain issues myself, a way to avoid looking head-on at all of the confusion that often floats around inside of my own head.”
I also started to realize that more often than not, our loved ones are just as scared of this disease as we are, and don’t always know what to say or how to react. I started to realize that even though the advice of strangers so often missed the mark, it was usually well-intentioned. And I also realized that in the big scheme of themes, it doesn’t really matter if others understood what I am going through or not.
What matters the most is that I do what needs to be done to take care of myself, confident in the knowledge that I understand what is going on…and as long as that is the case, everything will be okay.
A few days ago I shared a U.S. News and World Report article on Life with “Invisible” Illness, which states:
You have nothing to prove. “People are going to judge you. People are going to give you a hard time,” Smith says. “Educate them as much as you can. But at the end of the day, it’s not your job to prove that you’re sick.”
To which Phyllis responded: “I feel like I have to prove it every day. It makes me feel guilty at times because I don’t do something.”
As I read Phyllis’ words, my first thought was one of wishing that I could reach out through the screen, and give her a huge hug…because those words took me back to my own mind many years ago, when I myself operated by the same premise.
(Let me be clear, I am *not* passing judgment on what Phyllis had to say, nor am I trying to say that what she is doing is “wrong” and what I am doing is “right.” What I am trying to do is to use her honest and open words to illustrate the journey that I myself have undergone—from a point of feeling like I needed to prove what was going on and needed to have everyone else understand as much, to a point where I no longer have any desire to prove that I do indeed live with this day in and day out, and while I think it’s important to educate others and raise awareness in general, I am no longer bothered when I come across someone who doesn’t have a clue, or a family member, friend, or stranger who might share tips or ideas that really don’t help.)
Based upon the many comments and messages I have received over the years, this journey is one that I think most of us experience—moving from feelings of frustration, guilt, and needing to prove something to others, to realizing that what matters most is taking care of oneself.
(On a side note, I’m convinced that in a weird sort of way, once we began to prioritize our self-care above everything else, many people who didn’t previously “get it” start to comprehend just a little more the severity of the challenges that those of us who live with rheumatoid arthritis face on a daily basis.)
In regards to having nothing to prove, Doreen makes a good counterargument: “until you have to prove it to Social Security…” (Which just goes to show, there is always an exception to every rule!) What are we supposed to do in this situation? If we want to receive the services that we deserve, we of course have to prove our case, and get the other person to agree that we do indeed qualify for disability benefits.
Which begs the larger question, what about health care providers? What about doctors, who either don’t understand what is happening to our bodies and minds, or who for whatever reason doesn’t believe us? We have to prove something to them, don’t we?
In the past I would have been absolute in my response of “yes!” But as with many things, my approach has shifted over the years.
I am now at a point where I believe that, as a good friend pointed out to me, health care providers of this sort are betraying a very basic trust. It doesn’t matter is they’re doing it because of bureaucratic or financial reasons, or out of the misplaced belief that certain individuals are only out to “score” certain medications, or because they are overworked, or so on and so on. The reason for their behavior doesn’t matter; the end result remains the same: they are betraying the trust that a patient has placed in them, a trust that says that the doctor is supposed to work with the patient to find out what is going on, and to find answers in the hope that the patient can be well.
In the past I felt like I had to get these types of healthcare providers to understand, too. But I no longer feel that way, because my priority now is to take care of myself…and if a healthcare provider has shown that they are unwilling to help me attain this goal, I just move on.
What’s the beauty of doing as much? Whether we’re dealing with family and friends, strangers, or doctors, there will always be those who “get it”. And there will always those who don’t…but when we prioritize our self-care above everything else, and focus more on those who understand and less on those who don’t, we find ourselves surrounded with the (internal and external) understanding that all of us seek.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!