To friends and loved ones of those in chronic pain:
I get it. Watching someone you love live with chronic pain is hard. They are suffering and, although you try to offer support, it doesn’t seem to make a difference. Sometimes it may seem like they aren’t doing anything to help themselves, and all they do is complain. You wonder if they realize that you have your own problems too. It is a difficult situation for everybody. I’ve been there. I’ve been the person suffering–between my myasthenia gravis, breast cancer, and other various forms of neurological pain–and I’ve watched my family members suffer with their own pain. I know it can be a frustrating, exhausting, and confusing situation to navigate, which is why I thought it was important to take the time to share some of what I have learned from my experiences.
Validate first, let them know that they are not alone, then suggest ideas.
This is essential to any conversation with a loved one about their chronic pain. Validate, validate, validate. It seems simple and self-explanatory, but, in my experience, invalidation tends to be people’s natural response to complaints. Statements like, “oh, it can’t be that bad,” or “it could be worse,” are common replies to woes about lines at the grocery store or a mean boss, but they are detrimental to the emotional state of people living with chronic pain. The fact is that whether or not you think their response to the pain is reasonable or you think they may be exaggerating, although they most likely aren’t, this is how they are feeling. That is what matters. So, the first thing you should do is make sure they know that you believe them and that they have a right to feel this way.
The next step is to make it clear that they are not alone. For some people, especially those who are younger, it might help to make a list of people they can go to for support. Remind them that there are lots of people who love them and are on their side.
Then, if they are open to it, you can make some suggestions for moving forward. I say if they are open, because they might only be looking for you to listen, and that’s ok. Don’t feel bad if they shut you down when you try to give advice. It just might not be what they are looking for in that moment.
Things to Keep in Mind
Pain can’t be seen
One of the most frustrating things about chronic pain is that it can’t be seen, and there isn’t a way to objectively quantify it. Someone can look great and still be in a tremendous amount of pain. I will always remember comments I received when I was undergoing radiation treatment for breast cancer. I put on extra blush because I was tired, and people kept coming up to me telling me how great I looked. Of course, I didn’t feel great- I was just wearing extra MAC blush! It is important to remember that because chronic pain cannot be seen, many patients are invalidated by their doctors on a regular basis–they are told that it is all in their head or that it is just anxiety–the last thing they need is to hear that from their friends and family. The reality is that it isn’t any fun to be in pain, and very few people would make it up. So, if you love or care about someone, you just have to believe them. You can demonstrate that by saying simple things like “I hear you,” and “I’m so sorry that you have to go through this.”
Don’t compare people’s pain
Never try to compare anyone’s pain to someone else’s. It may seem like a healthy way to help your loved one put things into perspective, but I can promise you it is the last thing that they want to hear. NEVER say, “well, it’s not as bad as having cancer,” or “this person’s pain is worse.” Frankly, it doesn’t matter. The important thing is that this is how they are feeling right now. Comparing pain is one of the most common and worst forms of unintentional invalidation. I realize that on the surface it seems like it should make them feel better, but it feels more like you are telling them that they are wrong to feel bad at all.
There is some nuance here. You may find that your loved one will comfort themselves by saying, “it’s not too bad, it could be worse.” While this may seem counter-intuitive, it is important to note that the sufferer making that comparison is not the same as you making it. To the sufferer, when someone they care about minimizes their pain through comparison, it feels like they are invalidating their experience, but when they do it for themselves it is a coping mechanism. Nonetheless, if they say that, a good response could be, “that may be true, but what you are going through is still really hard.”
Encourage your loved one to continue seeking answers, even when it’s hard
When I was growing up and dealing with undiagnosed Myasthenia Gravis, countless people told me to stop searching for answers and to just learn to live with it. If I had stopped searching, I would have never been able to get diagnosed and treated and have ten wonderful pain free years. Medicine is advancing rapidly, so why should anyone have to give up and live with pain forever? That said, it is important to keep things in balance because if someone spends all of their time waiting for a cure, they may lose out on enjoying the parts of life they still can. Perhaps you want to gently help the person find that balance. Offer to help them with their medical research, but also encourage them to get the most joy out of life that they can. Encourage them to see if they can find three moments of joy in every day and maybe write them down. Even at my worst pain, I was able to find three moments, however small, that brought me joy (e.g. a greeting from my parents’ puppy, a glass of iced tea or a laugh with a colleague).
Beware of Positive Toxicity
Telling someone to think positive or be strong when they are in pain is another big thing to avoid. Yet, it seems to be the most common response from my family. It actually violates the invalidation rule by discouraging the person in pain from feeling their feelings. Avoiding negative feelings doesn’t make them go away, more often it can make them worse. Negative feelings need to be processed or they can fester. There is a difference between telling someone they are strong and telling them to be strong. It is completely ok, to say “you are strong, you haven’t gotten through so much in your life. You are a warrior and will conquer this too.” That is a very different statement from “you need to be stronger.”
It’s OK to encourage professional help
No one has all the answers and you definitely aren’t expected to. You have your own life and can’t take on all of another person’s burdens even when it is your spouse or other closed love one who is suffering.
If your loved one is in intense emotional distress it is OK to suggest professional help after you have offered all the validation you can. Make sure they know that this doesn’t mean you think all of their problems are psychological, but mental health professionals can provide tools for coping with chronic pain. They can also be beneficial to your relationship. You don’t want to have any guilt, resentment, or pressure between you and your loved one and a therapist can alleviate some of that. If you are a caregiver for the person in pain, don’t forget to take care of yourself too. Therapy or counseling could be beneficial to you as well.
Let them lead the way
If the person in pain wants something else, then scratch all of the above! Only the person in pain can tell you what they need, and the biggest mistake one can make is thinking you know what will help them more than they do. Remember, they are the experts in their own lives! For example, my niece doesn’t like it when I say, “I am sorry you are in pain.’’ even though that is what I usually think it’s the best thing someone can say to me. She says that makes her feel worse, because she doesn’t want me to feel like she is making me upset too. So, I switched to asking her “what can I do for you?”. She doesn’t like that either. So eventually I asked, “well what would you like me to say?” I realized I should have asked that first. She said, “when I am feeling anxious or in pain, I like to be left alone.” So that’s what I do now, while also letting her know if she wants me, I am here. Everyone is different. Some people want to ignore their pain and pretend it’s not there (not that this is a healthy method). Others need to process it all out loud. At times I violate my own rules (never compare pain) and actually want to hear about people who have overcome way worse than me because I think if they can do it, so can I. However, violation of these tips (e.g. never compare pain) have to come only after you have offered validation and then only if the person in pain tells you they want to hear it. So, you need to ask. You can’t go wrong when you let them lead.