People who live with persistent pain are big fakers. There, I said it. I live with someone with persistent pain every day and I see this acting first hand. She is such a good actor in fact that even as close as we are, sometimes I miss the signs. Oh, she isn’t acting about having pain – that part is very real. She is just great at pretending everything is normal.
My wife keeps herself incredibly busy since leaving work on permanent disability due to MS. She is usually up long past my bedtime and often up again in the morning before I leave for work. She is on several volunteer boards and is constantly stepping in to help with fund raisers, support groups and other noble causes. On top of this she trains our dogs, including a future brace and mobility service dog for herself, which requires on average 5 hours of work each day. She helps our daughters with everything she can, from life planning to career prep and college survival. Of course we also have our normal life commitments of dinners, birthdays, family gatherings and holidays – all of which she takes the lead on organizing and hosting, decorating, cooking and planning. Throw in a list of doctors’ appointments and trips out of town to see specialists and I honestly get tired just watching her go.
I’m telling you this so that you may understand how easy it is to forget that through all of it, her MS list of symptoms includes pain. Every day she has to fight through it, willing her body to push past the desire to give in, to just quit and let the pain win. And from the outside looking in, most people have no idea this battle is happening. The telltale signals are subtle but they are there; she will often start to wring her hands quietly. Perhaps her answers to ordinary questions get a little bit short. Sometimes she may say that she needs to sit and have a tea in the middle of a project that is under time restraint. Maybe she will tell me that we should leave her car in town and she will just catch a ride home with me “to save gas”. Each of these little things gives me a tiny glimpse into how her pain level is on any particular day; and these little cues are so very easy to miss. So if I, her husband and closest ally, have trouble catching the subtleties between a “good” day and a bad one, what chance does a stranger have of knowing that sometimes she is struggling just to stand up? The short answer is ZERO.
We need to be aware of the persistent pain that exists, often in invisibility, and realize that we most likely interact with someone suffering with pain every day; recent stats suggest that as many as 6 million Canadians suffer from persistent pain. That is about 19% of the population, almost one in five and trust me, they are very good at hiding it.
Every person suffering from persistent pain has their own path to follow, their own degree of pain to endure, their own level of tolerance, and their own methods of coping. This journey is often a very private and personal one and no one else can honestly say how “bad” someone else has it. I obviously cannot speak for all pain sufferers but I do have knowledge of what my wife goes through on a daily basis. (Note I said “knowledge” – I won’t do her or any other persistent pain sufferers the disservice of pretending I understand what it’s like). I see how she mentally beats herself up when her body refuses to cooperate and she is forced to miss an event she had looked forward to. The guilt she belies upon herself if she is not feeling up to helping someone as she had planned. The frustration she feels when she doesn’t get everything accomplished that she had wanted to that day. Through it all she keeps on a brave face that most of the world cannot see past. “But you look so good” or “You don’t look sick” are commonly heard from people when they find out she has MS. There is no way for them to know or understand how much effort goes into appearing normal. She, like so many others, is a fantastic actor. What these actors can use is some compassion from us, the supporting cast. Be kind. Some days it’s hard to keep a smile through the pain.