This has been adapted from Kera’s post, originally published here.
For people with chronic pain and conditions like Fibromyalgia, many of life’s daily routines can be a total hassle at best, and excruciatingly painful at worst. These are often known as “invisible illnesses” because sufferers bear no outward signs of illness, and may look totally healthy.
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 experience pain constantly, for no reason at all, or for reasons that wouldn’t cause pain to most people, like touch or pressure (this is. called allodynia). We often hear statements like “it’s all in your head” which are not only not useful, but often very distressing on top of pain and other symptoms. 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
Sometimes certain activities trigger our symptoms, other times they can come seemingly out of the blue. Sometimes we are capable of doing physical activity or other “normal” activities, often this comes with a big crash later on, and other times this level of activity just isn’t possible. Please don’t judge. It can understandably be confusing from the outside looking in, and sometimes we are accused of using pain as a convenient excuse. Chances are, we would actually like to feel normal and do normal people things, whether it’s going to a party or doing household chores. Please bear in mind that you are unlikely to witness the crashes that come as a consequence of certain activities, and don’t make assumptions.
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, but respect our wishes
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 sometimes be helpful when it comes from the right place, please don’t force it upon us. While we appreciate the thought, it is exhausting having our every behaviour commented on or analysed.
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 independence
While we do want to be asked if we need help, there’s a fine balance between being helpful and just reminding us that we’re somehow disabled. While we will often jump at the offer of help, we also want the chance to do what tasks we *are* capable of. For example, sometimes I prefer to carry my own bag, even if others have offered to help, and even though it may be a bit of a struggle. 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. 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 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 the Fibrofog!
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
We are not unintelligent. We just exhausted. Pain; gastro issues; restless legs and other symptoms can make a good night’s sleep almost impossible. It’s understandable then that we can at times have short attention spans, or suffer from the inability to make coherent sentences. I didn’t get stupid over night, I just didn’t get a good night’s sleep!
8. Don’t call us hypersensitive
We know that we are hypersensitive, just about all our symptoms are by definition some form of “hypersensitive”, but it’s almost impossible to say this without being insulting. Sensitisation goes with the territory, so please try to be understanding if certain stimuli are bothering us.
For allies: Try to strike a compromise for situations that your friend is struggling with. Maybe going to a loud live concert is too confronting, but a small gig will go down better.
9. Please respond to reasonable requests
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 make the effort. It might not seem like a big deal to you, but little things can really throw our concentration. It’s about being reasonable, I’m not suggesting everyone should cater to our every whim, but if it’s a simple request, please make the effort.
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!