5 Things Not To Say To Young People With Chronic Pain, And What To Say Instead:

*Note: These are all things that people have actually said to me, a real life young chronic pain sufferer.

5. “Have you eaten and drunk enough today? Let me get you home so you can rest.”

Children and young people with chronic pain learn very early on how best to take care of their own bodies, because we have no choice. While most of our peers have the freedom to “make mistakes,” we’ve learned that one night of carefree partying could lead to a months-long flare up. We know immediately when we’re beginning to get dehydrated or overtired, and we can usually tell you whether our next snack needs to consist mainly of protein, carbs, or fat without even consciously thinking about it. Doctors, parents, and our own bodies have been teaching us to pay attention and take care of ourselves for years.

Unless you’re a close friend or relative and we’re in obvious distress, please leave the caretaking to us. Nobody likes to be treated like they’re incompetent, especially not young people fighting for their independence.

4. “Have you tried [obvious or irrelevant treatment]? It totally worked for my [coworker/obscure relative] who has [completely different illness].”

While I understand that this one is frequently coming from a place of love, there are a few problems with it.

First, we probably have tried it. After years spent bouncing from one doctor or practitioner’s office to another, the chances of our having already tried acupuncture/massage/energy manipulation/going gluten free/physical therapy/peppermint oil/whatever else you were going to tell us to do are actually pretty high.

Second, we might not be in treatment right now. Being in active treatment is expensive, time consuming, and exhausting (both physically and mentally). Sometimes, young people with chronic pain need to take a break from the constant doctoring to focus on things like getting good grades, having a relationship, and doing interesting things with their youth. Constant suggestions of new things to try tend to pile up in a to-do list, making us feel ashamed of taking time off from treatment.

Basically, suggesting treatments when you’re not our doctor earns you this reaction 95% of the time.

3. “You’re too young/pretty to be sick.”

Wow. I guess my body didn’t get that memo. Sorry? (I’m not really sorry.)

Do better.

2. Random irrelevant idioms about pain. Examples include, but are not limited to: “What doesn’t kill you makes you stronger.” “Pain is just weakness leaving the body.” “This too shall pass.”

Most pain happens because bodies are healing themselves, or because difficult emotions are being processed. In these cases, the pain has a purpose and an end point, and while these idioms would probably still be annoying to most young people, they would at least make sense. For chronic pain sufferers, pain doesn’t have a reason. It’s not healing them, and there’s a really good chance that it won’t ever pass. Idioms like this that have no relevance to a person’s true experience can make them feel even more isolated, and like the person they’re talking to doesn’t really understand.

1. “Wow. I think I would probably have killed myself in your position.”

Via save.org ncbi.nlm.nih.gov

Suicide is the 10th most common cause of death in the United States. Chronic pain sufferers are much more likely to experience suicidal thoughts or actions than their healthy peers. Between feelings of isolation, feelings of being a burden on their families, feelings of hopelessness, and the constant roller coaster ride of new medications that many chronic pain sufferers experience, this is hardly surprising.

Before you make an offhanded comment about suicide to a chronic pain sufferer, or really to anyone, consider the not-terribly-small likelihood that they actually do want to die, or that they have wanted to die in the past. Please do not become another voice that confirms that a person’s pain-filled life is not worth living.

National Suicide Prevention Lifeline: 1 [phone]

http://www.suicidepreventionlifeline.org

If you've said one of these things to someone, don't panic! Everyone makes mistakes, and this particular conversation topic can be a real minefield of social awkwardness and errors. Here are some things that you can say instead so that you're prepared for next time.

3. “Is it okay if I ask you some questions about your health?”

The face I make when someone actually invites me to teach them about my illness

Curiosity is natural, and talking about chronic pain can often be helpful and cathartic for the sufferer. Usually, we will be happy to answer respectful questions and help our friends understand what we’re going through a little bit better. It can help to normalize our situation and make us feel less alone. There are days though, where we really just want to live our lives and talk about anything else. Always make sure to check in about what the other person is comfortable with before you start asking personal questions.

2. “Let me know if there’s anything I can do to make you more comfortable.”

Saying something like this allows you to offer a person help without being pushy, nagging, or demeaning. It also allows that person the opportunity to ask for exactly what would be most helpful, which might be something that you never even would have thought of. For example, I’ve asked people to wear less perfume around me, to turn down the ringers on their phones, and to trade seats with me so that I can have my back to bright lights.

1. “I’m so sorry to hear that. That’s totally unfair.”

At the end of the day, taking care of our bodies is between us and our doctors. Where you can really help is by helping us take care of our minds. Acknowledging our struggle and letting us know that you care means more than you can imagine. It really is as simple as that.