Written by Rachel Ehrenberg for the RSDSA blog.
Often times, we discuss what we want to hear from our loved ones about chronic pain. It is not often we get to tell them the things we need them to know and to hear. Rachel took the big step to make this list happen.
There are so many misconceptions about people with chronic pain. Unless you are living with it, nobody can actually truly understand what living in with it feels like. It becomes extremely draining emotionally and physically for us struggling with chronic pain. And for me, whenever I am having a rough time, there are a few things that I wished people knew about.
I suffer from Reflex Sympathetic Dystrophy (RSD)/Chronic Regional Pain Syndrome (CRPS). The majority of these points are directly related to my chronic illness and my own experiences.
- We need your help!
We don’t like asking for help and we certainly don’t like needing it. However, it is so important for us to know that someone will be there to help us through the tough days. With that being said, don’t always expect us to ask for the help. Because we try so hard to hide our pain, we don’t want to let others know when we need help. So sometimes its better for you to just come up to us.
- Just because we look “fine” doesn’t mean we feel fine.
It is so easy for people to forget that there is something wrong when we can easily put a smile on our face and walk around like everything is normal. We can laugh, hang out with friends, and carry a conversation all while the pain is getting more and more intense. We may need to take a step back sometimes and leave. This in no way means that we are always like this or that we are faking our happiness everyday. There are plenty of times that I am genuinely happy and don’t need to pretend. The challenge comes when the pain is exceedingly overwhelming and all we want to do is lay down.
- A simple text can mean the world to us.
Living with chronic pain sometimes puts us in a bubble of our own. We feel alone and isolated. Nobody around us can understand what we are going through and how we feel on a daily basis. The more these thoughts happen, the more we want to pull back from friends and loved ones. TEXT US. You never know when someone needs a little extra encouragement to get them through the day. Even a simple “you got this” or “thinking about you” will remind us that we aren’t alone.
- Stop trying to compare us to yourself or other people
Yes, there are people who have it “worse”. But if you tell this to a person with chronic pain, it makes us feel inadequate. Along with that, please don’t compare me to you. If you have an injury or something that causes you pain, I’m sorry, I know its awful, but do not try to tell me that your pain is anywhere near the same level as mine. RSD/CRPS is rated a 42 out of 50 on the McGill Pain Scale. This is higher than both childbirth and amputation. There is nothing we can do to make our pain go away. If you have the option to rest and the result will be beneficial, do it. Don’t complain to me that you have just been too busy to rest or that you just don’t want to take a break and now your pain has worsened. If I had that option, I would take it. And If I am trying to confide in you how I truly feel about my pain, just let me talk. Don’t say, “I completely get it” or anything along those lines. Because I assure you, you don’t get it. However, I do know that if you are injured or experience pain, your pain is very real. It is okay to complain about it to me, just don’t compare.
- Sometimes we just need you to listen
More often than not, people with chronic pain tend to bottle up their feelings in fear of loosing friendships or irritating others. When we finally find someone who we can trust to talk to, the new fear is, “are they going to try to fix me” or “are they still going to want to be my friend”? A large majority of people with chronic pain talk to doctors and psychologists all the time and the only thing they do is try to figure out how to lessen the pain or manage with it. There isn’t much support. If I trust you enough to put myself in a vulnerable position, please just listen and be there for me. But know that we aren’t trying to make you responsible for us. That is the last thing we want. For me, I can only share how I am feeling with people who I don’t think will judge me. If a person with chronic pain decides to talk to you, don’t rush them. We can talk to doctors all we want, but sometimes it’s just better and easier to talk to a friend. When we do talk to you, try to stay away from responses such as, “just deal with it”. Comments like this can be hurtful even if that wasn’t your intended purpose.
There are many do’s and don’ts when it comes to chronic pain. If you are ever unsure on what to say or how to say it, the best thing you can do is ask. We would rather have a conversation about our disease to answer your questions, then having you assume something. Please be patient with us. Although it may seem like we want to give up at times, we are trying our best to get through each day.