By Jo Malby
Chronic pain changes everything in life, most entirely invisible to outsiders. Many people do not seem to understand chronic pain or just how extensive its effects are, how exhausting always being in pain is, how displacing and uncertain, nor how hard that pain makes it to concentrate and think.
They cannot see that they have attempted numerous treatments, approaches and alternative therapies to heal and manage that pain, and know what therapies have worked or not worked for them, while the depth of loss and longing for our lives before it began becomes as constant as the pain.
There are so many considerations healthy people do not have, alongside symptoms themselves, the attitude of others, as well as our own complex inner feelings. The chronic pain patient wants those around them to empathize with their situation rather than be sympathetic, to have understanding, not pity, though sadly, understanding can be extremely rare. Not that there aren’t compassionate souls who support us, but because the “pain experience” is hard to grasp.
In the spirit of informing those who wish to understand, here are some things that can enable you to do just that to help people who have, often debilitating, chronic pain:
1. Those with chronic pain talk differently from those not in pain.
Those with chronic pain often talk differently from those free of constant pain. Many people forget that after many years of pain, we just want to appear normal — so we modify our behavior, and avoid letting people see just how much pain we are really in.
A numeric pain scale is used as a quantitative measure to identify pain intensity for medical professionals, with description of pain being on a scale from one to 10 (one being “no pain at all” and 10, the “worst pain ever felt”).
After many years of chronic pain and despite it often worsening, this scale may change and shift, instead being more reflective of individual tolerance to ongoing pain, especially in progressive conditions. What was once an eight is now a six, for instance. People can only measure pain against the most pain they have experienced.
Yet for most who may have experienced pain at this level, this was acute pain, a different physiological process, and even if was severe, it was likely still brief when compared to constant pain of CRPS, for example. This makes such subjective understanding by those without chronic pain all the more difficult.
2. Never assume the chronic pain patient is not experiencing pain when they say they are fine.
Hiding the pain due to lack of understanding in others, protecting others (from feeling uneasy or helpless, after all, no one likes seeing someone they care for in pain), or just to fit in is a natural response to ongoing pain. Accept that words are often inadequate to articulate how the chronic pain patient is feeling.
Recall a time when you were in pain, then multiply the intensity and try to imagine that pain is present 24 hours a day, every day, without any relief in sight. It’s hard to find the words for that kind of pain or experience.
3. Respect the person with chronic pain’s physical limitations.
With chronic pain and invisible illness, the uncertain nature of our fluctuating symptoms can be as confusing to us as patients as it is to those around us. Our mobility, pain levels and ability to cope with movement can be erratic, unpredictable, and frustrating for all involved.
Pain patients do not know from day-to-day how they are going to feel when they wake up and each day has to be taken as it comes. In many cases, they don’t know from minute to minute. This is one of the hardest and most frustrating components of chronic pain.
Even with the most meticulous planning, sometimes the pain flares or is just too fervent. Being able to stand up for three minutes doesn’t necessarily mean we can stand up for 20 minutes, or an hour, or give you a repeat performance.
Just because we managed to sit up for an hour yesterday, does not mean we are able to do the same today.
4. Understand the difference between happy and healthy.
When you have a nasty bug or an injury that suddenly hampers your life, you may feel frustrated and miserable. Chronic pain patients have experienced pain from six months to many years, even decades, without a break. That changes you. It changes how you respond to the pain, as well as how much and how well you hide it.
Pain has caused us to adopt coping strategies that do not necessarily reflect the real level of pain we are feeling. When we see our loved ones, we are happy. Happy is not the same as healthy, but we may choose to hide our pain for others as well as ourselves. Sadly we are often misjudged for it, especially when they rarely see how excruciating and debilitating the consequences are afterwards.
Many struggle to believe you can be in severe pain if you are happy, laughing or simply not voicing the pain in the same way someone without chronic pain would expect, but voicing it does nothing for the pain, in fact focusing on it can make it worse, and only serves to make others feel uncomfortable. Laughter is also one of the most enjoyable ways to manage it and cope.
Respect that the person who is in pain is trying their best. Associating illness with exclusively feeling unhappy or thinking it impossible to be in pain and still find joy is a great source of misunderstanding.
5. Be patient.
If you’re impatient or want someone with pain to “just get on with it,” you risk laying a guilt trip on a person who is already struggling with pain, undermining their determination to cope.
They may have the will to go out or engage in another activity, but have neither the strength nor the coping capacity as a result of severe pain. A chronic pain patient may need to cancel a commitment at the last minute— please do not take it personally.
Instead, always remember how blessed you are to be physically able to walk, sit, stand, run, dance and do all the things that you can do and how sad the patient is at having to cancel [again] due to severe pain, illness and disability.
It’s important to remember that the pain is in charge, not your loved-one or associate. While you could get annoyed, it shows a complete lack of understanding of chronic pain and all they endure on a moment to moment basis.
Always be understanding if they say they have to sit down, lie down, stay in bed, or take medication right now. It means that they have no choice but to do it right now. Chronic pain does not forgive or wait for anyone. We’re already hiding immense pain, and when it flares up, it becomes unimaginable.
6. Noise, crowds and other stimuli can make pain skyrocket.
Another consequence of chronic pain altering how we process pain is that noise, crowds and other stimuli can cause intense increases in its severity.
Sound can cause pain and when that becomes noise, it intensifies. When then fused with all the other stimuli from a crowd, it can open the pain gates and overstimulates our nervous systems, making the pain skyrocket, in turn exacerbating brain fog, so we’re left even less able to explain… or escape it. It can become so complicated, we may avoid it entirely, no matter how rare or deeply we long to go out.
7. Be helpful.
Much as holding onto our independence is so dear to us, frequently we need support in more obvious ways. Living with chronic pain means we depend on healthy people to assist us or visit when we’re too pained-up and sick to leave our home.
A general “let me know if you need anything” is obviously compassionate and deeply appreciated but tends to result in our not accepting it, being too proud or even feeling shame for needing this help. But a specific question, like: “I’m going to the supermarket, can I pick something up for you?” is essentially the same offer but one we’re more likely to accept. It also doesn’t leave us feeling indebted in ways we cannot repay. We may need help with shopping, cooking, cleaning, getting to the doctor or collecting medication. Some may need help with their children. Changing bed sheets, for instance, is an immense or impossible task in pain but one so deeply appreciated.
You can be an immensely healing link to the normalcy of life and support them.
Being able to talk about the pain openly with others is important — it’s such an all-encompassing part of our lives — and not talking about it or defining us exclusively by it is, too, and it helps us feel less isolated or distanced by the pain. It offers a little taste of normal, which is, after all, what so many living with chronic pain and complex illness truly long for.