I’ve noticed that lupus makes me super-sensitive to the things people say when I express how I feel. I sometimes feel caught in the middle, in the matrix.
There are days when no matter what you say, no matter how hard you smile, people know something is wrong. You’re hobbling. You wince when they touch you in the right — or should I say wrong — spot. (Sometimes even our skin hurts.)
Then they will say, “Oh, I see you’re limping today. Are you OK?” When you reply that “today the lower half of my body is being disobedient,” sometimes their response is “I know. Me, too. Last week my knee was so stiff that . . .”
I’m 47, and my crowd is getting older. Some of my friends are in their 50s and 60s. Many get around better than I do, a situation that prompted me to make a tearful phone call to my mother last week.
My hands are swollen and my joints hurt, but I continue to type. My eyes are dry and my body in pain, but I keep pushing myself to get out of bed and get things done. I’m still relatively young, yet folks who are at hobbling ages are riding bikes, playing racquetball, and practicing yoga.
I now have difficulty raising my left arm to put my hand on my hip. I feel so winded halfway through my showers that I wonder how clean my back really is. And some days I have a difficult time taking the six steps from my dining space to my kitchen space to put the dinner dishes in the sink.
“I know. Me, too,” people will say, and I want to ask them: “Did you have to manually turn your head last night while trying to sleep?” Because people don’t think about the neck being a joint. I also want to ask if they have ever had to drink nothing but juice all day because opening their mouth wide enough to take in food caused pain, and the joint in their jaws was giving them fits.
Instead of saying these things, I smile and try to move on, however. Why? Because people are either uncomfortable with someone else’s pain, or don’t know what to say. They also really think that a stiff knee and your hobbling are similar. They have no clue that last week’s stiff knee can come back in the hips, the knees, the ankles, or sometimes a couple of toes.
I also bite my tongue because I don’t want to bring everyone’s mood down, and talking about chronic pain will do it. I want to spread awareness, not engender guilt. And I want people to see me coming, and want to spend time with me.
So I smile when they say, “I know. Me, too.” I know they haven’t a clue. And I actually celebrate that cluelessness. The last thing I want is for them to know the kind of pain I endure.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.