Beyond the pain - what chronic pain sufferers really want you to know.
Today is the start of Australia’s National Chronic Pain Week. Did you know that more than 3.6 million Australians are living with chronic pain and that it’s the leading cause of disability? I know I didn’t. And I am a chronic pain sufferer myself!
Chronic pain is more than just a physical sensation, for many it is a daily battle impacting every part of their lives. Unlike acute pain, that usually comes about as a result of an injury and stops once you have healed, chronic pain usually persists for months and sometimes years. It can be very difficult to diagnose and even harder to treat which can leave sufferers feeling frustrated and completely isolated.
The process of trying to get a diagnosis is fraught. Most chronic pain sufferers have experienced the devastation of having their symptoms minimised or ignored by medical professionals because their test results don’t explain the severity of their pain.
Some are led to believe that it’s all in their heads and that they can just will the pain away with the power of positive thinking. I call bullshit on that.
The pain is absolutely real - and it can be debilitating.
I’m no expert by any means, but my understanding of chronic pain is that it’s largely believed to be happening when the nervous system is in over-drive, sending pain signals to the brain without cause. The neural pathways between our brains and our nervous system are actually re-programmed to be hypersensitive to pain signals. Some people believe chronic pain is a result of stored trauma in the body, or as a result of being in a sustained period of fight or flight. Bessel van der Kolk’s The Body Keeps the Score goes into much more detail about the link between trauma and chronic pain and is worth a read if you want to read more in depth on the topic.
Whatever the cause, it can be very isolating and really frustrating to live with.
For the last few years I have been in constant pain. The severity varies and some days are better than others, but there is not a single day where I don’t experience pain. I have a chronic auto-immune condition which causes pain and extreme fatigue. Most mornings when I wake up, I scan my body to feel what hurts and how badly. If I managed to get a good sleep, and my pain levels are low, I can usually contemplate doing tasks that require a bit more energy. Other days it feels like I have run a marathon while wearing a heavy coat through the mud, just by getting out of bed and having a shower. And the worst part is, I never know when it’ll knock me down, so I tend not to plan too far ahead as a result. I know my friends and family must get sick of me not committing to plans or cancelling plans at the last minute. I hate it too! I like to plan, so this has certainly made life a little challenging at times.
I also worry that because they only see me on my good days, that they may forget that I am unwell, or think that it can’t be that bad because I seem to be OK. I worry that they will expect that a good day is indicative of what I’m like the whole time and be confused when I cancel plans next time. What they don’t see is the toll it takes in private.
That’s the thing about invisible illnesses. If someone has a broken leg it’s obvious to outsiders that there is something wrong. People will make accommodations and be understanding because they can see your limitations. There is also an expectation that this state is temporary. You’ll be in a cast for a while until your leg heals, then once healed and you’ve done some rehab - you’ll be able to do what you did before. But when your pain is not visible or obvious to others’ it can be very difficult to garner the same level of understanding. This is probably the hardest part for many chronic pain sufferers - the isolation and lack of understanding even from those who love us the most. I can’t tell you how many times I have had to cancel plans because I cannot physically carry them out. People are understanding at first, but the invitations start to slow down the more times you have to cancel plans. And I get it, I really do. It must be frustrating trying to make plans around someone who cancels all the time. But imagine how frustrating it is for the person who has to cancel. How much they want to go, but just can’t.
This brings me to the spoon theory that has become popular amongst chronic pain/illness sufferers. First coined by Christine Miserandino in her 2003 essay about her experience with lupus, she used spoons as a metaphor for the amount of energy required to do every day simple tasks. So say for example we each have 10 spoons per day. People without chronic illnesses may use a spoon to do a work out at the gym, another to clean their house, and yet another to complete a complex work task and still have plenty of energy left for the rest of the day. People with chronic illnesses may only start with 4 spoons and it costs them 3 spoons of energy just to take a shower, so they have very little left for anything else.
It’s why many chronic pain sufferers limit their activities to conserve their energy. They know how many spoons it’ll cost them to do something, so they are constantly making choices about where and how they use what little resources they have.
I know for me, I’ve found such value in listening to my body when it’s telling me I need to rest. I take regular breaks and try to be gentle with myself. I’ve found working for myself and managing my calendar in a way that allows me to be flexible and work around my pain and fatigue levels has been such a gift. I try not to over-extend myself and over-schedule my days. If it happens that I’m having a good day, I can always add more to my plate, but I feel less guilty and beat myself up less if I don’t make too many plans that leave the door open for me to have to cancel. But it is a balancing act.
Over time I have found a few things that have really helped me live with chronic pain. Here are a few that may resonate with you too:
Focus on self-care. For me, this looks like resting when I need to, eating a balanced diet and staying hydrated, and when I can manage it, doing some light exercise.
I try to do more of the things that bring me joy. Listening to music, spending time in my garden, immersing myself in a good book or playing with my cat.
Sleep. There is nothing that seems to impact my pain more than whether or not I am able to get a night of restorative sleep. Perimenopause has meant this is often hard to come by, but I’ve found that improving my bed-time routine has helped. It works for little kids - so why not adults?
Having grace for myself and wearing my pain loosely. What I mean by that is that I try to just notice the pain when it comes rather than be consumed by it. Pain is information, so sometimes I will sit in meditation and ask it what it’s trying to tell me. Sometimes this helps to shift it a little. Sometimes it doesn’t, but I figure it’s at least worth a shot
Journalling. There’s a podcast I enjoy by a woman named Nicole Sachs called The Cure For Chronic Pain. While the title of the podcast is a bit problematic for me, much of her content really resonates. I especially like her take on journalling. She calls it “Journalspeak” which refers to writing down the unfiltered truth of your innermost thoughts and feelings. She recommends writing for 20 minutes and just letting it all out. Once the timer goes off, either tear up the pages or delete from the screen if you’re typing. What you’re writing is not for anyone to see, including yourself, which allows you to be completely honest and unfiltered. Then once finished, spend 10 minutes in meditation to help regulate the nervous system and process what feelings have surfaced. I’ve found this really helps, especially when I do it often.
Reaching out to others for support. Whether it’s online or in real life (or both) there are loads of communities where people share their stories and provide support to one another. Find your tribe.
Educating myself. I’ve found the more knowledge I am armed with the more I can advocate for myself when dealing with the medical profession. I do have to be careful not to put too much stock in Dr Google, but instead focus my attention on seeking out factual information from reputable sources
Communicate effectively with those you love. Manage expectations and be honest with how you are feeling. It can be helpful to let people in on the bad days as well as the good so they can better understand your experience and be there to support you when you need it
Therapy. Yep, even therapists benefit from therapy. When you are in a job that requires you to hold space for other people’s pain and suffering, you need to have an outlet to unpack the feelings it brings up in yourself. Talking to a mental health professional is really important for anyone experiencing chronic pain and illness to help them cope.
Laughter. Chronic pain can be so all-consuming and it’s very easy to wallow in self pity when you feel like crap. I find that laughter helps so much. Whether you watch a funny show, or scroll funny videos on social media or have some belly laughs with friends - it can really help manage the pain.
Navigating life with chronic pain can be a lonely journey and it requires an abundance of patience and understanding from both the sufferer and the people around them. By sharing our stories we can hopefully feel less alone. We can build supportive communities where chronic pain sufferers feel validated and accepted. We can borrow from the serenity prayer and have the courage to change what we can, the serenity to accept what we cannot and the wisdom to know the difference.
© 2024 Jodie Blewitt - meaningfulchangecounselling.com.au