“Oh, no cane today! You must be feeling better!”
“You look a lot healthier than you did last week. Things must be going well.”
“Your new meds must be working. You seem to be moving pretty easily.”
Actually, no. I’m not using my cane today because my hands are swollen and in pain. It hurts too much to lean on them. I am healthier than I was last week, but only because I finally caved and started taking a steroid that makes me sick to my stomach and causes me a lot of anxiety and panic. Based on my blood work, my condition has actually gotten worse since starting my new medication, but I don’t want to admit that to you (or myself), so I’m trying to be upbeat. I’m pretending it doesn’t hurt to move. I’m really good at pretending.
These are the things I want to say when the people who care about me tell me how much healthier I look. I want to tell them that looks can be deceiving. I want to explain that my disease does not affect the same joints in the same way every time. I want to explain that my legs might feel better today, but that doesn’t mean my shoulders (or hands, or neck, or elbows…) aren’t acting up. I want to explain for the hundredth time that I’m not going to “get better” and I’m never going to “be healthy” by their standards. My disease isn’t going away. My disability is permanent. How I look isn’t going to change that.
But I don’t tell them these things. Strangely, I might if they were strangers. I might go into the whole process of describing how chronic conditions work and how my disease ebbs and flows from day to day. But for these people, they’ve already heard that story. They know that I’m “sick.” And when they tell me that I look better, healthier, stronger, they aren’t doing it because they don’t know what I’m going through. They are looking for hope. They want me to be better. I can see it in the looks that pass across their faces when they see me walk into a room without my cane, or when I dance a little to the music at work, or when I choose the stairs instead of the elevator. Relief. Maybe she isn’t in pain today.
Usually these are well-intentioned friends and coworkers who are trying to be supportive. When they tell me I am looking better, I usually take it as a sign that they are trying to be attentive to my condition. I think they are trying to be supportive and show that they care about my well-being. I appreciate the sentiment, but I can’t deny the fact that is makes my life more difficult. I wince every time I hear one of these well-intentioned comments. When someone comments on how good or healthy I look, I am instantly reminded how invisible my disease is and how hard it is to get people to understand what my daily life looks like.
When I get one of these comments, I worry what will happen tomorrow when I have to use the cane again. How will this well-meaning friend react? Will they be disappointed all over again? Will they be frustrated? When they assume that improvement in one joint means total recovery, I wonder if they will take me seriously when I express pain or frustration about a different part of my disability. Will my working legs mean they won’t understand why I can’t use my hands? The truth is, my physical appearance trumps my physical experience every time.
These are the comments I find the most painful and the most difficult to deal with. They are the comments that I have yet to find a way to respond to in the last 10 years. I want to explain. I want to make people understand that they can never understand. I want them to know that there is so much more to my disease than what they can see. But I don’t want them to think that their attentiveness is unnoticed. I want them to know how much I appreciate their desire to see me healthy. I want them to know how much I wish it was as simple as what they can see. I value their friendship and support. I value their good intentions. But good intentions don’t equal understanding.
I’m looking for a way to clarify. A way to politely and compassionately disagree. A way that doesn’t require a speech on the details of my condition. One that acknowledges the good intentions without ignoring reality.
“No, I’m not feeling better, but thank you for asking.”
“I’m feeling better than yesterday, but my health is still complicated.”
“It’s really too soon to tell if the meds are working. I’m just trying to stay upbeat about it.”
None of these quite work. None of them communicate what needs to be said. So for now, I just smile and pretend their good intentions are my reality.
The Mighty is asking the following: What’s one phrase you wish people would stop saying about your (or a loved one’s) disability, disease or mental illness? Why? What should they say instead? Check out our Submit a Story page for more about our submission guidelines.