The 5 Worst Things People Say to Me about RA

You guys have been there. Hearing the same comments over and over. Some you like, some are funny and some probably get under your skin a little. Here are my hidden thoughts about some of the comments I hear all the time. I bet some of you Rheumies and CDP’s hear these, too! After 8 years, I’ve heard just about everything, I think. It’s actually a bit humorous anymore, and I don’t mind. There was a sermon recently that reminded us to ponder the phrase, “for they know not what they do.” And actually, this is true. Most people I meet are well-meaning in their comments, and even though it’s the millionth time I’ve heard their comment, it’s the first time for them and they are really trying to encourage. So I run everything through this filter and with rare exception, it makes everything a little more palatable.

Here goes…

“But, you don’t look sick… ”

Most folks probably mean this really as a compliment, that I’m in pretty good shape for the shape I’m in. 😉 But sometimes you can tell when folks are questioning whether the symptoms you say you have really do exist, like is there a little faking going on – ’cause you actually look pretty healthy… ???  Well, yes, there’s some faking going on. But the only faking I do is faking “well.” Faking “sick” is not something I care to spend my time on. This is true of most RA patients. The side effects of this disease and all the meds it requires would never, ever make me want to fake any of this. I can’t imagine anyone pretending to have RA.

“But, you’re so young…”

How does that song go – “too young to be this d___ old…”  ?? Yes, I definitely feel that sometimes. Often times, actually. I’m not sure what the classic definition is supposed to be of how old people should feel, but I’m sure I found it out way too young. Rheumatoid disease and other auto-immunes are not prejudiced towards the older set. In fact, there are many of these illnesses that specifically show up in earlier years, like Diabetes 1 and juvenile rheumatoid arthritis.

“Well, Mrs. Comer… <long pause>…you’re really kind of complicated…”

I just laugh. It’s funnier if Chris is with me on the visit because he just runs with it. Seriously. It’s hysterical. The doctors are right – my case is so, so complicated. But RA is complicated anyway. Heart/lung as primary rheumatoid targets is really unusual. Thankfully, the good Lord has spared my hands and I continue to enjoy piano playing and teaching though not as easily as before these diseases, but my case does present a really weird puzzle for my doctors to have to put together. They always bring the residents in on my visits. It’s kind of funny. Then there’s the other heart stuff, the pacemaker stuff… which could be related or even caused by the RA, but maybe not – ?  And this crazy blood pressure that falls through the basement on a whim, so I eat salt and Fritos all the time. To my doctor’s credit, I’m not the best patient and would often push through pain and other symptoms when I should have given in to it and rested. This covers up the true picture of what my presentation really is and how bad my symptoms are, which complicates things for the doctor diagnostically. I’m trying to do better in this regard. There are times when being an over-achiever and a competitive soul is just not the right answer.

“No, no, let me do that. You don’t need to be doing that.”

Okay, I feel really bad for my family on this one. Finding the balance between “I need help but I don’t want to ask for it” and “I feel better today so I’d like to try to do it myself” is just hard, especially when you don’t ever “look sick.” This is just how the invisible illnesses work. Chris and I play with this all the time, he’s so funny, and humor actually helps us keep it all in perspective. Truth is, having to deal with this one hurts. So bad. I just can’t do the things I used to do. And honestly, I probably shouldn’t try. Just before this last flare, I’d learned to drive the tractor and bushhog the fields. I was so excited!! It was so much fun, and there was the little part of me that thought, “I was a beast and beat RA today!” There’s just something that jumps up within us when we win over this yucky disease. And who wants to always ask for help anyway? The independent, type-A over-achiever in me certainly doesn’t. But alas, the docs have said no more bushhogging, it’s too much. And I was in an overdo hangover for days, it was terrible. I’m growing in the area of asking for help and trying to let others to help me a little more. Most people are really happy to help in any way they can, so I try to step out of my pride and let them get a blessing from helping the little lady who takes her hiking sticks everywhere.  I’m guessing I should have taught this to my kids a little earlier, since as teenagers they don’t jump at the chance to do dishes or vacuum now, haha

“The Lord doesn’t want you to be sick. We should just pray harder.” or other similar comments.

This one kicks off a firestorm in me, every time. Nevermind the difficulties of every day life as a chronic disease person, but to think that I have or keep these diseases because of something I did or am/am not doing, is almost just mean. The spiritual side of suffering is so very complicated. And there are lots of studied, professional thoughts on this subject. I’ve studied this one and will readily concede, it’s a deep, deep subject and I don’t understand it all. I’m convinced that there is not an answer my mind can comprehend. Truth is, I’ve known people, good, Godly people, who have prayed and prayed and have entered Heaven too soon as a result of disease in their bodies. Joni Eareckson Tada writes eloquently on the topic of naming and claiming healing, and she inspires me greatly. Surely if enough prayer and doing good works were the magic answer, she’d be out of her wheelchair by now.

God’s timing is different than ours, and His ways are not our ways. Honestly – I wouldn’t want a God that my finite little mind could fully understand. How small would that god be? This “pray enough” kind of approach sends the message that I’m sick because of something I’ve done, and I’m not getting well because of something I’m not doing or not doing good enough. While sometimes that may be the case, such as in illegal drug use or alcoholism, for example, that’s just not always the case. God’s sovereignty does not rest upon my ability in any way. I’m satisfied with not having to have all the answers. I’ve made peace with it. This much I do know – if I surrender it all to the Lord, He will use it for His glory. For me, that’s all that matters, and I’m up for the task. Whatever. Whenever. For as long as.

Those are some of the comments that drive me a little batty. I’m sure we’ve all had similar reactions to various comments. What are some comments you hear that drive you nuts, and how do you handle them ???

Rock on, Rheumies, rock on –