For people with chronic pain and chronic conditions (Like Fibromyalgia, Chronic Fatigue Syndrome and so on), many of life’s daily routines can be a total hassle at best, and excruciatingly painful at worst. These “invisible illnesses” are often ignored because hey, if I can’t see concrete blocks weighing down your limbs, surely that means it’s all in your head.
As frustrating as it can be for the sufferer, I think it’s also important to accept that those close to them (such as family; romantic partners and friends) are entitled to feel frustrated too. It can be hard to deal with someone whose health is constantly unpredictable, and it can be very hard work if they are constantly having to “carry” a person emotionally, in terms of workload, or even literally physically.
So here are a few pointers you can use to be a better “ally” to those living with chronic conditions in your life, or if you are suffering from the conditions yourself, something you can share with your loved ones to help them understand what you’re going through.
1. Understand it is not “just in our head”
Just because you can’t see it or the source, doesn’t mean the pain isn’t real. People with chronic pain conditions like fibromyalgia often experience pain constantly. It goes on and on and is often in the background no matter what we do. To a certain degree you learn to live with it, but there will be times when pain will flare up, on bad days, at certain times of the day, with certain activities, with stress, with certain food and so on. This pain is real and it can be debilitating. “Drama Queen” is something we hear over and over again, often from the people closest to us too. It is the most hurtful thing. We get that you can’t understand our pain, we know you can’t feel it. But please don’t dismiss it.
2. Understand that we have good days, and we have bad days
As mentioned in the first point, the pain often varies, and there are so many different reasons it can fluctuate. For me personally, people haven’t been able to understand how I can go and teach a Zumba class, and at another time have to pull out of nights out; spend the day in bed instead of getting through my To Do List and so on. Please don’t judge. Just because I can do something one minute and not the next doesn’t mean I’m faking it, or using pain as a convenient excuse. Chances are, I would actually like to feel normal and do normal people things, whether it’s going to a party or doing household chores. Don’t use this as a weapon against us.
For sufferers: Try to understand that to most people this does look like a complete contradiction, and be understanding rather than defensive when this gets brought to your attention. Also try to be reasonable to others’ requests by making sure you do make a dent on the work you need to do when you do have the energy, rather than using the good days to just live it up (though you should definitely do some of this too!).
3. Ask how you can help, and don’t push fixes down our throats
Many people experience chronic pain for years before being diagnosed and offered treatment. We find ways to get around it, manage it, or we just grin and bear it. Chances are we have tried everything, and while your input can be helpful when it comes from the right place, please don’t shove it down our throats. Also accept that it is exhausting.
(Rant warning) One thing I get all the time (because I have a lot of back pain) is my posture. Everyone feels they have a right to comment but you know what? I know. I know if I’m not sitting straight; I have spent hours and literally thousands of dollars on treatment. I have been to physios; osteopaths; chiropractors; acupuncturists… the works. I have had X-Rays, body examinations, alignments and all sorts. I know correct posture. The fact of the matter is it hurts. If you don’t know what it’s like to spend all day everyday in pain with not a single comfortable position then kindly don’t comment. If blobbing in front of the TV gives me some degree of relief for a few minutes, please let me enjoy it.
I don’t think anyone with chronic pain actually enjoys it or wants to be in pain for the rest of their lives, so trust that we will resume correct posture or look at alternative solutions shortly.
For “allies”: Ask “Can I help you with….?” before barging in (unless it’s obviously dangerous or they are audibly in pain!). If you have heard of potential solutions, ask if they would like to hear about it before giving them the sales pitch, and be prepared to accept “no” for an answer. If they don’t want to do it, they don’t need to justify it. Please don’t judge them for it.
4. …But at the same time, please let us have some shred of independence
While we do want to be asked if we need help, we don’t want to hear it every minute reminding us that we’re somehow disabled. My boyfriend is amazing. He is super helpful and often carries my bags for me, or picks me up and drops me off to prevent me having to walk with heavy bags and so on. It is something I appreciate so much and can’t thank him enough for. But I also appreciate that he lets me do my own thing. Sometimes I feel like carrying my own stuff, even if I have been in pain a bit. It might seem bloody minded, but it makes me feel that bit more in control and that also has a huge impact on my condition because…
5. Mind and body are very closely linked
Feeling in control helps me feel better, and I’ve noticed huge correlations between my pain and my mental attitude, and I know a lot of people are the same. Many of these conditions have a huge mental aspect (no that doesn’t mean we are crazy!) so a lot of situations have the capacity to dramatically affect our health both positively and negatively. Anxiety is a huge issue for many people, and particularly when chronic pain issues come into play it can wreak havoc on all sorts of bodily functions and pain.
Don’t hold us into arguments
I can’t stand conflict, and it doesn’t help that brain fog can make it really difficult and frustrating to get my points across clearly and to be understood. As a result, arguments are a nightmare. Arguments make me incredibly anxious and that has a huge effect on my body pain; fatigue; bowel and brain. If someone with chronic pain is trying to remove themselves from a conflict situation, please let them go and trust they want to address the issue to come back to it at a later point.
Support us when we get into spirals of negative self-thought
Negative self-thought goes with the territory. It is frustrating as hell to have your body unable to keep up with everything your mind wants to do, or to have your mind go foggy right when you need to focus. Everything is just that much harder, that much more time consuming, and requires that much more drive and motivation. Let us have our moments of venting, but remind us why we are awesome- sometimes we are really hard on ourselves. It’s really hard to keep up the happy spirit, but that happy spirit contributes so much to improving our condition, so sometimes we do need our friends to remind us of the great things we have accomplished and how unique we are.
6. Don’t Interrupt!
If someone in your life suffers from “brain fog” or “fibro fog” please understand that it can be really difficult to get an idea across or a sentence out straight. It might be frustrating to listen when we stumble over words or our sentences don’t quite make sense but let us get it out first, and ask for clarification if needed after. Also, if we forget a word, please don’t jump in to give it to us (half the time it’s the wrong one and just distracts us!)- we will ask if we need prompting.
7. Don’t assume we are stupid
Please. Just please. I am not unintelligent. I am just exhausted. You know when you haven’t slept all night and the work coffee machine has been out of order all month? Yes. This is me. ERRRDAY. Pain; gastro issues; restless legs and so on can make a good night’s sleep almost impossible. I think it’s understandable then that we can at times have the attention span of a fly or inability to make coherent sentences. (For eg. I just wrote: “convince” “concice” “concise” before realising ten minutes later I meant “coherent” and have made about a million typos in this post… this coming from a member of the grammar police.) I didn’t get stupid over night, I just didn’t get a good night’s sleep!
8. Don’t call us hypersensitive
Just don’t. I KNOW I am hypersensitive, everything that is wrong with my body is by definition “hypersensitive” but we don’t need you to say it (especially as it’s almost impossible to say this without it being an insult thanks to assumptions about sensitivity and femininity… and well that’s a story for another day).
9. Please respond to reasonable requests
You know how you keep blasting music while I’m studying? Or engaging in another conversation while you’re talking to me? Or you’re moving around the place doing stuff while I’m trying to keep up with you? That is impossible to follow. Multitasking is hard for most people, let alone when you can’t actually remember the last time you woke up feeling well rested. If you get asked to do something simple like turn the music off or give the person you’re speaking to your full attention for a few minutes, please do it. It might not seem like a big deal to you, but little things can really throw our concentration ten times more than for others, and even little things can make us anxious. Again, it’s about being reasonable, I’m not suggesting we should be rolled out a red carpet everywhere we walk or that you should spring to attentive attention at the snap of our fingers, but if it doesn’t hurt you, don’t kick up a fuss.
Listening is one of the most important aspects of any relationship. Just listen. Yes we can be moody, irritable, anxious, confusing and just about every other adjective under the sun. We are human. A little bit of compassion and active listening will go a really long way. This is not something easy to deal with, so just hear us out and be open to having an honest and open conversation with us. This is the absolute best and sure fire way to make sure that you are being supportive in the way that is needed, and to ensure that we are fulfilling your needs in the relationship too!
Thanks for reading guys. This is my first time posting on this issue so please feel free to let me know in the comments if you have anything you’d like to add, or any tips or amendments to make!
Image courtesy of Tiverylucky / FreeDigitalPhotos.net