I have lived with chronic pain for over 40 years and thought I had dealt with my feelings associated with how people responded to me, my pain, and the various situations my pain has either put me in or prevented me from being in. For instance, as a child there were many times that I could not do the physical things my siblings and friends were doing so they thought I was a wimp, or maybe I was just home from the hospital or was in a cast for a while and they’d think I was looking for attention, or just trying to get out of doing chores. I knew that deep down they didn’t really think I’d do to that extreme just to get out of washing the dishes, but it was hard for me to understand why I had all this pain, why wouldn’t it be hard for them?
Of course the doctors didn’t help much, either. I am an advocate for greater education about pain and pain management for all medical professionals, especially doctors of all specialties, because currently there is not enough about how pain works in our bodies and the impact it has on our lives, nor do general practitioners or specialists learn the best ways to treat various kinds of pain. If this is true today, and it is, imagine what doctors understood about the whole pain cycle and its management 30 or 40 years ago. At one point in my early teens I honestly thought that what the doctor was telling me was that if he couldn’t fix it surgically, then I didn’t have a problem. Who knows, maybe that was what he was telling me because the following year he operated. And I needed four more surgeries after that, including a spinal fusion, but I still have the pain.
So I thought I had heard it all and that hearing, “But you look so good, you can’t be in pain,” a few more times wouldn’t bother me at all. And if I heard it once or twice when I went out for an evening it probably wouldn’t bother me. But picture this: I went to a family party last weekend and after being there about ten minutes I asked my daughter, the only one there who I knew would get what I was saying, if there was a contest I wasn’t aware of.
“Did someone start a lottery to bet on which person was going to be the 100th person to tell me I couldn’t be in pain or my MS must be in remission? Or perhaps which person would be the one who would finally get me to snap and start running around like a lunatic?”
She laughed with me, but agreed that even she could see the patronizing, large smiling people coming up to me as though I had just buried my best friend, taking my hand and insisting I look great. Or saying something like, “I am so glad you aren’t in any pain tonight, you couldn’t be and look like that now, could you?”
It was a lovely party of about 100 family and friends, and while there were tables and chairs to sit and eat, as typical with my family everyone was standing around talking and after a while people started dancing. I have always loved to dance and miss it a lot so I danced my version of a fast dance, which is to stand in one place with my two forearm crutches and move around to the music a little, which I knew was going to put away any doubts a person might have about me not having any pain.
Hello Denise,
I just read your profile and I think you are an amazing woman. Your post about your family gathering makes me wish people were more understanding. Instead of saying, "You can't be in pain because you look so good", wouldn't it be more appropriate to just say, "You look good today", and leave it at that. Instead of assuming based on the way a person looks what they are feeling. I feel like instead of people adjusting to our situation we have to adjust to how people react to our situation. Anyways, I hope you have a great day.
theresag
Hi, and thanks for your comment. I always just say Thank You when someone pays me a compliment, and I often wonder when it stopped feeling like a compliment and began to feel a little like an accusation. As I described, sometimes the way it is said, or the insistence with which it is said makes me feel like if I look this good I can't be hurting or having any problems. I am happy if they think I look good and I don't care if they think I am hurting or not, just please don't challenge me. Do you ever feel like because you look good or do something that doesn't fit into the other person's idea of what you should be able to do then they think you can't have any physical problems to the extent you have? Am I making sense or does this sound all confusing? it is difficult to put into words sometimes. There are occasions when a person will grab my hand, look into my eyes and say with deep emotion how good I look today and how it makes them feel so good to see me looking so good because they know I must be feeling good or not in pain or some other silly thing. I get this deep desire to say something back like: "My goodness what do I usually look like that you are so relieved to see me looking like this? It must be pretty bad." or "Well thank you, I can tell you what make up I use and maybe you can look this good too." or "Please tell me what a person in pain or not feeling like looks like, I didn't know t here was a special look" But I say these things to myself because I know that most of these people don't know any better, it comes back to we can't know what we don't experience. It is up to us really to educate the general public about our disease and sensitize them about what our lives are like with MS. Instead, I say them to myself and smile, or I change the subject and often make a joke because humor always helps loosen up an uncomfortable situation. Thanks for your comment and for signing on. Denise