Day 18 of NHBPM has me thinking about what advice I’d give to someone caring for a patient with my condition (Complex Regional Pain Syndrome). I’m going to ponder this prompt from the perspective of caring for a friend or loved one with CRPS, rather than from the perspective of a practitioner treating a patient.
Every person is a little bit different from all the other people. Each person with CRPS is unique and the way in which one person likes to be treated might not be alright with another.
Having a friend who lives with CRPS can be challenging. Their symptoms fluctuate frequently, are unpredictable, and the differences in their capabilities can alter drastically in short amounts of time. There are things that you can do to help a friend who is living with chronic pain and other things that it just helps to know.
Disclaimer: no part of this blog post is intended as judgment on anybody other than myself (there’s this bit further down where I had a bit of a realisation).
CRPS can be hard to explain, for both doctors and patients alike. The headlining symptom of CRPS is severe chronic pain. Over time, chronic pain causes changes to the brain and nervous system that can result in many whacky symptoms on top of the pain. CRPS can effect mobility, cause swelling, effect blood flow, cause changes to the skin and hair, effect perspiration and permeate into every aspect of a person’s life. Click here for a detailed description of CRPS.
When it comes to caring for somebody with CRPS, it’s important to remember that the severity of their condition is always changing. “How are you today?” is never a redundant question, no matter how many times you’ve heard “really sore” in response. Allow your friend or loved one a chance to explain anything that might help you to help them, at that time.
CRPS is constantly fluctuating, it’s not helpful to assume what I can, or should be able to do at any particular time. Sometimes I can walk, sometimes I can’t. Sometimes I can use my hands, sometimes I can’t. Sometimes I can drive, sometimes I can’t.
People can often feel like they should already know things without ever having learnt them. Fear of asking a “stupid question” stops a lot of people from finding out the things that they don’t know. When it comes to asking about another’s capabilities, fear of crossing an intimacy line can also get in the way of open communication. Asking about health can feel like prying.
CRPS effects everything that I do and when those activities involve other people, it effects them too. I can’t speak for others, but personally, it’s OK to ask about my health when considering future plans or even during current events, because it is relevant.
I’d much rather smile and say, “No, I’m fine”, than to not be fine and struggle to find the words or courage to tell you that. It can suck to be an unintentional party pooper, but that can be made a little bit easier if the other partygoers are aware that my health failing is a possibility.
A person who lives with CRPS has a brain full of signals that are zapping around in useless circles. Sometimes, these signals get in the way of regular thinking, kind of like trying to have a conversation at a rock concert. This doesn’t mean that a person with CRPS is any less intelligent than they were before they developed CRPS, it just means that it can be more difficult to get our brains to work around the constant malfunctioning. Brain fog can also be the result of, or exacerbated by, medication.
When I am experiencing brain fog, I’m easily dazed and find it hard to take in new information. I struggle to find the right words and take the Freudian slip to a whole new level of almost-nonsense. You’re unlikely to see me during a really bad flare, however my lovely prince is often privy to my brain fog stutter, which is what happens during a sudden pain spike and involves my face scrunching up as I try to say any words at all.
In my experience, it’s not a good idea to have important discussions when feeling particularly foggy, those can end up as arguments for no good reason.
Socialising is a tricky thing when forced to factor in CRPS. Many people who live with chronic pain can’t drive, or can only drive short distances. Many can’t cope with public transport due to travel times, unpredictability, vibration and the perils of being delicate whilst in a crowd. Travel limitations can easily get in the way of friendships.
Inviting people to come and visit can seem like hard work after years of living with chronic pain. Personally, it can feel like asking for charity, like begging for friendship. This is because I don’t have the ability to reciprocate the (much appreciated) effort of a visit.
It can also be difficult to determine a time that is “free” during which I can arrange a lounge room chat-date. I recently wrote about how it can be difficult to take time out from doing very little. Making plans involves designating future time and time can be hard to find amongst all the pain managing.
(This stuff might be news to you; this stuff is probably news to you. I’ve never really written about this before, not that I can remember)
I usually want to see you, I just don’t always have the presence of mind, or resilience to possible rejection that’s required to organise a get together. Asking you over for a drink and a chat doesn’t seem like a particularly alluring invitation, which is a bit nuts because being on the reverse side of such an invitation sounds totally awesome.
(I might have issues, friends, I just might)
I felt bad taking your friendship, because I felt that I didn’t have anything to give back. I wasn’t recognising my own friendship as a thing, I was just seeing the practical and physical things that I can’t do. I couldn’t see past the effort that I was asking from you in asking you to come to me. Look, I’m either being silly or I was being silly, it’s hard to tell.
(Aaaaand, this is why blogging is the best therapy that I know of. This was not planned, this little epiphany…they never are. Do you know me well enough to have my phone number? Please consider yourself invited over for coffee and a chat, text me, we’ll hash out the deets)
There are so many people that I’d love to hang out with more often, if only I had to ability to go to them and, you know, if I could tolerate doing things more often. I’m going to try to not let my give-and-take issues get in the way of me asking you over anymore, please remind me if I forget.
Seriously, bring food. You know how in American soaps and sitcoms, neighbours are constantly showing up with food after bad stuff happens? That is an awesome thing. Grocery shopping and cooking are sometimes too physical for me to handle and I need help. This is fine when I have my lovely prince here, however sometimes I am alone and it’s not fine at all.
Being an adult and asking somebody to come and feed you is not the easiest thing to do. I was having a hard time not that long ago and a friend texted to tell me that she was on her way, that she was going to cook and what did I need from the grocery store? It was basically the best thing ever. She cooked two healthy dishes that kept in serves and fed me for the next few days.
It can be demoralising to not be able to take care of my own personal needs. Friends who understand this and help without being asked are utterly amazing. This isn’t an indictment on any of my friends who have never fed me, this is just a cool story about this awesome time that one did.
It’s always so nice to receive invitations, however invitations that come with a personalised effort to check into whether or not I have transportation, or will need assistance to attend, are that little bit more special. It sucks to have special needs, but I do have them.
It can be disheartening to have to rely on others for transportation, or to have them literally push me around in the instance that I need to use my wheelchair. I can’t manually operate a chair because I have CRPS in four limbs and I don’t have thousands to spend on an electronic wheelchair when it’s only for occasional use.
Asking for this sort of help from friends can make me feel like a burden and often adds extra stress to my attempts at getting out and socialising. A couple of good friends really understand this, they offer me rides when they know there’s an event I might like to attend, they offer me their muscles and elbow grease to get me up and down ramps, they go out of their way to pick me up or drop me off. I appreciate their generosity and effort oh, so much, but it’s still hard to ask for it.
Chronic pain chips away at independence and that’s a hard thing to lose.
At some point, a friend with CRPS is probably going to cancel plans with you right before they were about to happen. This is because of the unpredictable nature of our condition, we can go from functioning to invalid in the space of minutes.
Please try to remember that it’s not you, it’s not even me, it’s CRPS.
It doesn’t feel very nice when people cancel on you at the last minute, I’ve experienced that myself and I hate that my health frequently forces me to be that canceller. It also doesn’t feel very nice to miss out on so many things, to have to stay home instead of going out and having fun. Neither sides of this coin are pretty; please try not to blame your chronically ill friend for not turning up to things.
There’s an extra step that you can take here if you want to be sure your friend knows that you understand and still value them: tell them so. A text message along the lines of “I’m sorry to hear that, maybe we can catch up another time?” can leave me feeling less stressed about cancelling plans than the echoing silence of no reply.
My condition mimics the nature of a dodgy friend. If I’m cancelling plans, I’m weak and probably a little bit emotional. It’s easy for me to feel excessive guilt over this and a little note that lets me know that nobody hates me for not turning up can help far more than I feel like it should.
It’s my responsibility to take care of my own guilt (that’s why the “should”), this is just a tiny thing that friends can do that happens to help.
This is the easiest one. This is the absolute easiest way to be a good friend to somebody who lives with CRPS: Simply let them know that you care.
I spend a lot of time by myself and when the pain is bad and not much is changing, it can get lonely. Getting messages helps me to feel connected, even when I don’t have the strength to reply to them.
I blog freely, so when I’m having a rough time, there is usually something on the internet about it. It helps to have people read and respond to what I write, even if that response is just a thumbs up, just a little sign that a friend was here. It can be hard to know what to say when your friends are feeling awful, but a simply “x” or “o” can really go a long way toward letting somebody know that they’re not alone, that they have been heard.
It’s a cliche for a reason, just like most cliches are.
There are those who believe that a life with chronic pain or illness is too complicated to also include romantic relationships, or even friendships. I disagree, both intellectually and through how I live my life. I have fabulous friends, wonderful family and an amazing partner and I’m so grateful that they still want me in their lives, damaged or not.
Or, did you use to have some less than amazing friends? I’d love to hear those stories too, sometimes it’s easier to learn from mistakes than miracles.
Thanks so much to everybody that has been supporting me in the NHBPM challenge! If you like what I am doing, please share these posts with the people that you share things with or click that little thumbs up. It’s CRPS Awareness Month, which is why I’m choosing to disclose a little more about my health on a daily basis. The more awareness that we can raise, the easier it will get for people who are navigating the choppy waters of chronic pain.
Love & Beaded Friendship Bracelets,
This post written as a part of National Health Blog Post Month, run by WEGO health. Check out what people have been contributing via #NHBPM on Twitter, or joining the NHBPM Facebook Event.