Things not to say to someone with chronic pain... and how to respond.

I bet all of you have received some not-so-helpful advice from friends, family members or co-workers. I believe that most people mean well, but since they don't have enough knowledge, it just comes out wrong. To the person with chronic pain, it can feel very insulting, and it might be hard to think of an appropriate answer right then and there. That's why I have made this little guide for you!

"You don't look sick."

Not all illnesses are visible on the outside, for instance cancer, diabetes, high blood pressure, cardiovascular diseases, and lung diseases. Just because you can't see them with your own eyes doesn't mean that they aren't real.

I have lived with this pain for so long, and am so used to it, that I don't show it in the same way others do. It's very common that people with chronic pain look like they are in less pain than they actually arm. If I stayed at home everytime that I'm in pain, I would almost never get out of the house. I'm used to doing pretty much everything despite my pain, so working or hanging with my friends doesn't mean that I am not in pain. More often than not, I am in pain but I just don't tell others. What you don't see, however, is how exhausted I am when I come home, how much energy even the smallest things take. Also, some days are better than others. Just because I wasn't in pain yesterday doesn't mean that I'm suddenly all fine.

"You just need to think positively."

Thinking positively won't automatically cure me, just like it won't cure cancer or diabetes. Chronic pain is very complex and can actually lead to severe consequences if it isn't treated properly. The constant pain that limits what I can do often makes me feel depressed and hopeless. I don't choose to feel that way - if I did, I would obviously be happy all the time. In fact, it's completely normal to feel this way in a situation like mine. However, I work hard on identifying any negative thoughts and turning them into positive ones. It's extremely difficult but I get better and better at it every day. Then again, I do need to vent and complain about it now and then, because bottling it up or suppressing my feelings will only make it worse in the long run.

"I don't think it's healthy to take medication every day just to feel normal."

I wish I didn't have to take medication daily, but I have discussed the situation with my doctor and together we have come to the conclusion that, in order to live a life that is as close to normal as possible, I need certain medications. You always have to weigh the pros and the cons, and in my case, the positive effects of my meds outweigh the side-effects. For example, taking painkillers so that I can work is better than lying in bed all day. Taking sleeping pills is better than only getting 2-3 hours of sleep, because I need to rest. Taking hormones for my endometriosis may cause side-effects, but it's still better than having to deal with excruciating pain everytime I get my period. Besides, taking meds for my pain and its underlying issues isn't any different from taking meds for your high blood pressure or diabetes.

"I get that you're in pain, but you have to at least make an effort."

I am making a huge effort, and I'm doing the best I can considering the circumstances. It's not always easy because the pain affects my whole life. This often makes me frustrated, upset, and sometimes even depressed - just like most people would be in my situation. Some days are better than other, I'm more motivated and don't feel as helpless as usual. Other days, I may be really sad and worried about the future, and I might not be the least motivated whatsoever. I have talked to my doctor about this and asked for a therapist - which is definitely making an effort. I also keep trying to learn more about how I can handle the situation, but it's very difficult and will probably take a long time. I'd love it if you could support and motivate me. Let's sit down and talk about how you might be able to help me.