I will be the first to admit that living in chronic pain can make me a bit…sensitive. I think when you live with pain or a disability, there is a tendency to think that people are judging you or criticizing you. I often feel a sense of inferiority at not being able to do what women my age can do. I also tend to feel there is a stigma attached to being chronically ill and, especially, to taking pain medication.
Through my discussions with fellow chronic pain sufferers and from my own experience, I have compiled a list of things that I am often told that people think are helpful, but for most of us, they are not. I am cautious in how I state this because I know that most people mean well and really are trying to help. I also know that after a couple of years living with this, many people feel they need to walk on eggshells with me. I am sure no one wants their support system to feel that way, so here are some things I personally find less than helpful:
1- “You just have to accept that this is God’s plan and have faith.”
This is one of the most difficult things for me to hear because it transfers my anger to my higher power and that is not healthy for my faith. By telling me that I am living in pain is part of some master plan does not increase my faith, but rather harms it. I know there is a reason for everything and everything happens for a reason, but when repeatedly told to “just have faith,” I feel angered because what I think many people do not realize is that I do have faith, if I didn’t, I couldn’t live with all the negative things in life and survive.
2- “You just need to relax.”
My pain is not the result of being anxious or uptight. I have tried yoga, meditation and weekly massages, but it doesn’t make my pain go away. Loved ones need to recognize that living with chronic pain comes with anxieties. But these anxieties are not the root of my pain, they are the byproduct of it. Reminding me that I need to relax or calm down does not help me relax, it does the opposite.
3- “You know you have to work at getting better, right?”
I have been told this by doctors especially, as if I don’t work at getting better. I take every new-fangled medication offered, I do physical therapy and I find outlets for my anxiety. When someone looks at me I worry they are seeing a lazy person who has given up. Telling me I have to work at my recovery just amplifies that.
4- “Think about what this is doing to your _____(insert stressed-out loved one here).”
I am well aware, and live with a lot of guilt about the fact that I feel like a burden on my loved ones, I don’t need a reminder.
5- “You just have to be patient, you will get better.”
Sometimes when I hear this, I want to scream- it hasn’t gotten any better in two years what makes you think it’s going to reverse if I keep waiting? I know there are new treatments and medications that may help, but most of us with chronic pain have no concrete diagnosis or what we have is not curable.
6- “But you look fine.”
Thank you, yes, I do. I dress nicely; I do my hair and makeup when I have the energy. I laugh, I joke, I make light of my situation. I walk without much of a noticeable gait issue…but things are not always as they seem. Invisible illness is sometimes more difficult to deal with because you constantly feel like people think you are faking it.
7- “You have to try…”
I have been offered every medication, supplement, exercise program and weight loss trick in the book. Whereas many people appreciate suggestions on things that can help them deal with chronic pain (I know this is true, because you are reading my advice lol), it does not mean that advice is always warranted or welcomed.
8- “You are lucky, it could be worse.”
It can always be worse, but try to remember that many times, when pain is not being well-controlled, it feels pretty bad.
9- “Don’t stop talking to me and being my friend just because you can’t fix me, it will only make things worse.”
10- “Be careful not to get addicted to pain medicine”/being made to feel like a criminal because we need to take pain medication.
11- “God doesn’t give you more than you can handle.”
My response is sometimes, what did I do to deserve this “test” in the first place.
12- “You should see a psychiatrist /therapist.”
Although both can be very helpful, to pass off pain as something that is simply the result of depression or anxiety is insensitive and incorrect.
13- “I wish I could stay at home all the time like you.”
14- “You can do x why can’t you do y?” Or “You were able to do that last week, why can’t you do it now?”
Anyone in chronic pain knows that, it’s not always consistent. I may have been able to drive an hour the other day and be fine, but today the pain may be worse or different and not allow me to do certain things.
15- “You should feel reassured that they can’t find something wrong.”
In my case, I have screws and rods that account for my pain in my back, but not all my pain. When I hear “nothing is found on you scans” I want to scream. I don’t want to be sick, but lack of evidence to support my pain further makes me feel like I am stigmatized and that the pain is in my head, which I know it is not.
Can you add to this list?