As I have been traveling this bumpy road on my journey with CRPS and chronic pain, I have had a lot of time to think about stuff. I’m sure for many people it is weird or strange or uncomfortable to have someone in your life dealing with chronic pain or illness. Especially if you have never dealt with this kind of thing yourself, it can be hard to know how to act around or support that person. I’ve been thinking about it, and I figured that since I have been “lucky” enough to have acquired this knowledge over the last couple of years, it might be a good idea to share what I’ve learned with you guys in case you ever find yourself in that situation.
Dealing with an invisible illness like CRPS is exhausting. I know, for the most part that I don’t “look” sick, but that means pretty much squat in my world because I actually work pretty hard to look normal. If I look bad, you know I am in rough shape. I don’t want people to look at me with that look, you know the one. It’s usually a sad half smile or a look that barely disguises their pity. But I don’t want people to feel sad or uncomfortable around me, so I’m hoping these tips and tidbits might help.
I’m still me
Please don’t forget that. Don’t forget about me. If you want to spend time together, please invite me to things, to coffee, to movie dates, to just hang out. If I’m not up to it, I will tell you, but let me be the one to decide. I cannot guarantee how I will be feeling from one day to the next, sometimes from one hour to the next, but that doesn’t mean I want to be stuck at home all the time either. I know out of sight out of mind is natural, but please, if you value me and our friendship, let’s keep talking. I know life gets busy but this thing I’m going through? It gets pretty lonely. I value your friendship probably more than I can say right now, and I need you, but might be having a hard time asking because I already have to ask for so much.
Your help is greatly appreciated
There are a lot of things that are really difficult for me to do right now, and I won’t BS you about that. It’s really embarrassing, sometimes humiliating, for me and I hate that I can’t do them. These are things that you probably take for granted, I know I did. Having a hand injury really makes you appreciate just how much you need two hands for. If you see I’m struggling, or you think it might be difficult, and you feel comfortable doing so, please offer to help. It is hard to ask for help. It makes it far less embarrassing to accept the offer of help than it is to feel like you are imposing by asking. Even things like doing up my own seatbelt or opening doors can be challenging and painful, but trust me, I feel more than stupid asking for help with them, so would prefer to struggle through than actually ask. Also, I can’t tell you how much your help really means. I have had friends literally just buckle me into the car without a second thought, cut up my lunch, open my water bottles and drive me all over town. As hard as it is for me, I am learning to ask for help and any that is offered or given means so incredibly much to me, even if I am embarrassed to accept it in the first place.
It’s okay to come to me with your problems too
You know what? I want our friendship to still work both ways, and the only way that is goin to happen is if you treat me normally and come to me with your problems, issues and complaints too. I relish the opportunity to give back to you in any way that I can, and it is a nice distraction from my stuff. You had better believe that I still have two shoulders for crying on, ears to listen and arms for hugging. I want to feel that I am contributing to our friendship, and giving as much to you as you are to me. It’s also a nice distraction from my own junk to be trying to help someone else for a change.
Forgive me if I don’t follow all of your suggestions
Please know that if you offer suggestions about things that you think might help,I appreciate you thinking of me, but I may not be able to try them. In my case, I am on medications to try and help reduce my pain to a level where I can function on a day to day level,and am working really closely with a team (yup, I actually have a team) of doctors whom I trust explicitly. I know that your offers of helpful products comes from a place of love, and if it is something that doesn’t conflict or contradict my meds, I will totally look into it. I’m getting into meditation and may even try yoga when I’m healed up enough. Please understand that even if I don’t do/try/use your suggested product or therapy, it’s not because I don’t value your opinion or appreciate the time you’ve put into looking into it for me. There may be a reason you don’t know so please don’t take it personally. I do incorporate things that I can, and especially appreciate suggestions relating to relaxation, self-care and cool things to do, since it isn’t all CRPS all the time if I can help it.
Forgive me my bad days
I try really, really hard to keep my bad days to myself, but it’s not always possible. If you know me well, you know that I hate to cry. I hate to show any kind of weakness or anything that I perceive to be weakness in myself. Please believe me when I say that I will do my absolute best to keep the rough times to myself, but I also ask your forgiveness for the days when I might seem a bit “off” or short. The last thing I want to do is make anyone else feel bad because I am, so if that is the case, ask me if I’m having a tough day.
Don’t ask if you don’t really want to know
So many times, “how are you” is a question people they feel they should ask out of social convention, rather than something they really want to know. Please know that if I ask you how you are, I really do want to know, and I am going to assume the same is true for you. As I’ve mentioned, trying to fight yourself and seem happy and cheerful when inside it feels like you have been invaded by angry electric eels is exhausting, and I often don’t have energy to try and figure out if you really want to know how I am of are just being polite. I have a standard go to answer of “I’m fine, thanks” but chances are I’m not, I’m just saying that to be polite too. If you really want to know, I am more than happy to tell you, though, and I hope you will do the same, because I really want to know.
Please ask me questions
I am happy to answer any questions you have about my condition. I want you to stand beside me and help me advocate, I want you to understand if you are curious, I want you to know. Ask me questions. You want to know what I go through every day? Want to know more about it, or my treatments? Want to know how you can help? Ask! I fed, strongly that if I want people to understand what I am going through, it is my responsibility to be as open and honest as I can to help facilitate that.
Just be yourself
Really. I don’t want you to treat me differently, as per point number one. I know that it can be tough to know if you are saying the right thing, but just be yourself. Be funny, irreverent, sarcastic, emotional, anything. Just be the friend I know and love.
Really, there is no perfect way to do this. I really just wanted to share some things that I have come across over the last few years that have made a difference in my life. I am really, really blessed to have an amazing group of family and friends who support me through the good times and the bad. Dealing with chronic pain sucks the big one, but maybe these tips will help you understand a bit more about what it is like and how to make an impact for your friend or family member.