September is Pain Awareness Month and this year the theme is Let’s Talk About Pain.
We’re almost into the third week of September already, so I’m a wee bit late to the party! But in a way, that’s kind of fitting. Pain has a bad habit of getting in the way of life.
Pain – Overwhelming, Unpredictable and Frustrating
When people work in tough, demanding jobs, they can normally come home and switch off. They get days off. They get holidays. But when you live with chronic pain, you don’t get those perks. The pain is constant. It can be an uphill struggle every single day. It can be extremely overwhelming. It can be unpredictable and extremely frustrating. Some days the pain might be better than other days, but it never actually stops.
I Can’t Imagine Life Without Pain
People often say to me, “I can’t imagine what it must be like to have constant pain.” I’m glad they can’t. I wouldn’t wish it on anyone.
The thing is, I can’t imagine life without pain. I would love to experience it, even just for a day, but that’s probably an unrealistic dream.
Life Revolves Around Pain
“Can I get out of bed today?”
“Can I brush my teeth today?”
“Can I visit family today?”
“Can I go for a coffee with a friend today?”
Those are normal, everyday tasks for most people. But for a chronic pain sufferer, those are the kind of questions we have to ask ourselves.
Let’s Talk About Pain
I talk about pain often. There are more than a few posts on my blog explaining what it’s like to live with chronic pain.
I Didn’t Always Talk About Pain – I Said I Was Fine
When I was young, I didn’t talk about my pain. I didn’t want to admit that I even had pain. That was partly due to being embarrassed. I was young, self-conscious about my scoliosis and talking about my pain would have drawn attention to it. But I think the main reason for not talking about it was that I was in denial. I didn’t want to admit that I couldn’t do normal activities because of my pain, so I just didn’t want to mention it. I mean, if you ignore something, it will go away. Right? Hmmm…I think I got that wrong. I pushed myself beyond my limits but in doing so, I only made my pain worse. By my mid-twenties, I simply couldn’t ignore it. I was in constant, disabling pain. But even then, I still rarely talked about it.
My family knew how much pain I was in. They didn’t need to ask because they could see I was in pain. But, when they did, I said I was fine. Even after I took early retirement due to my pain, I still said I was fine.
When he heard me, my husband sat shaking his head. “Why do you say that? You’re in agony. You can hardly get out of bed. Why do you lie to people?”
Why did I say “Fine” Instead of Talking About my Pain?
It was easier than explaining. When you live with pain like this, there is no simple answer. How long would it take to say exactly how I was?
It was exhausting living with it, never mind talking about it.
I didn’t want to talk about pain. It was depressing. It was difficult enough to live with. I wanted to get the subject out of the way fast and start talking about something nicer. By saying ‘fine’, I could do that.
The people who mattered in my life knew how I was. Even if I had said that I was fine fifty times a day, they knew that I wasn’t fine.
But I changed…
I Started Blogging About my Pain
Late in 2009, my Mum passed away. The following year, my pain soared. I decided to start writing a blog. I wrote personal posts about my Mum, but then I started writing about my pain. And once I started to talk about it, I didn’t stop. It was as though I had opened a release valve. Everything came tumbling out. I was open and honest.
I often wrote when I was having a very bad day. I moaned, groaned, complained and said, “it’s not fair” a lot. But by writing it down, my mood started to change. I got it out of my system and by the end of a post, I felt more positive. Writing can be very therapeutic in that respect.
Since I wrote a lot about trigeminal neuralgia, I shared that blog with people from TN support groups. Some group members told me that I’d written exactly how they felt. They hadn’t been able to explain their pain or their feelings to family. They shared my blog because they thought that it would help their families to understand their pain.
As well as helping me, writing about my pain had also helped other people.
Why Should We Talk About Pain?
Although I blog about living with chronic pain, I do still prefer to say I’m fine when people ask how I am. There is normally something nicer to talk about than my pain, but I am a wee bit more honest than I once was. But I do think that talking about pain can help people. It can be a release valve for some people because it’s normally more helpful to talk than to bottle something up.
Living with Pain can be Lonely
It can be a lonely world living with pain. Talking about it can help other sufferers to know they are not alone. Getting support is paramount and for many people, the best support comes from other sufferers with the same condition.
But talking about it can also mean spreading awareness. Most awareness groups are run by sufferers themselves. We have to advocate for ourselves. Very often, we have to do our own research.
We have to talk about pain. Because if we don’t, who will?
I believe this to be especially important when you have a rare condition like trigeminal neuralgia. People rarely know about it, unless they are affected by it. The only way we can change that is by talking about it. On October the 7th, it will be Trigeminal Neuralgia Awareness day. Hopefully, TN will be getting talked about then. I will be blogging about it, and will be sharing other sufferers’ voices. Please follow my blog and social media pages so you don’t miss those posts.
Do you live with chronic pain? Do you find it easy to talk about it? Or do you feel that people don’t really want to hear what you have to say? Please leave a comment below.
I’d really appreciate if you could share this post. If you do, please use the hashtag #LetsTalkAboutPain.
Thank you for reading.
I ‘ve been living with chronic pain for the last 10 years and i too never really spoke about it or how much pain i was really in , i just felt like nobody wanted to hear it or listen to me moaning about pain .
It has only been the last six months that i have started talking about it and how the pain affects my everyday life .seeing a pain councillor has been the best thing i have done and i would recommend anyone living with chroinc pain to see one .
Thanks for commenting, Claire. I think we can maybe only go for so long keeping it too ourselves. I know many people get help when they see pain counsellors or therapists.
I hope your pain is low today.
Thank you for mentioning a pain counselor; I will make the call asap.
Thank you for sharing your journey and how writing is therapeutic for you. You are incredibly strong to face pain everyday. Posts like this are special, and make me very grateful for online support groups.
Online support groups are amazing, aren’t they?
I have friends that are living with chronic pain and it really is a hard journey but thanks for sharing and raising awareness. That way my friends can express themselves too, feel loved and cared for because you are not alone there’s people who understand you! Great post!
Talking about our pain can be an important way to raise awareness. We need to end the silence. But I think we also have to balance that with allowing ourselves to be “fine” some of the time.
Yes, it’s about balance. I agree with that.
Thanks for writing so openly and honestly about your chronic pain. I really feel for you and other sufferers of chronic pain.
I totally agree in that when you share what you’re going through with others it can really help them not feel so alone. It is also very therapeutic for you. That’s the same way I feel when I read about others who go through what I am going through. It’s like, you find your community!
When I first started reading your blog I wondered how you remained so positive and helpful in your posts. How it wasn’t simply complaining and moaning about how unfair life is. But I’ve read plenty that are exactly that, and nothing positive. After reading this, I can almost see your transformation and the attitude change. I love how much your blog teaches me and helps me understand others with chronic pain. I have a good friend who experiences this, and I feel like I’m a better friend to her because I read your blog. Or at least I can understand things she isn’t saying, if that makes any sense. Because she doesn’t really talk about it either. I love how you bring awareness to your pain and can help so many other people.
Thanks Erica. It makes perfect sense. If you’re able to understand what your friend isn’t actually saying, it makes you a really good friend and believe me, she will appreciate that.
Wow, that would be helpful for my friends to understand my chronic pain.
So many spot on points and I nodded sadly along with all of it. I find it hard to think of how things ‘used to be’ and it’s difficult imaging life being any different now, to picture life without pain and everything it comes with. It’s taught me a lot and I do genuinely think, as cliche as it sounds, it makes us stronger through having to deal with it day in, day out. But it definitely can be a lonely place and I think blogging is a good way to let a little of the burden lift off your shoulders of hiding it all behind smiles and saying ‘I’m fine’. It also helps others know they’re not alone, and posts like yours do just that, while raising awareness of the reality of pain because there’s still a lot of ignorance and stigma surrounding it. Great post, Liz ♥
Caz xx
It might sound cliched, but it’s true. I think we do become stronger. But I also think we become more understanding and tolerant of other people’s problems too.
Thanks for sharing your journey and it’s quite inspiring for some of us that you remained positive even after through that. It’s great that you are spreading awareness about this topic and it makes people feel that they are not going through it alone, that we have each other.
Thank you for sharing your journey. this is i always try to think positive.
When I started my blog, I planned to shine a light into dark places, like mental illness. At the time, I didn’t know I would also be talking about pain. I experienced pain back then, but … nothing like now. Pain changes you. I think it’s just as important to talk about pain as it is to talk about all the world’s other ills. Only by dragging the hard stuff into the light can we truly deal with it.
@dSavannahCreate from dSavannahRambles xoxo
Your comment causes me to acknowledge my need to express my struggle with pain in my blog and newsletters to subscribers.
{{{Hugs}}}.
Thank you for sharing about TN, honestly, I’ve never heard of it before. I’m glad that there is a designated day to bring about awareness. I look forward to reading more of your posts!
Coming from me, I only have family to deal with. Everyone else has gone by the wayside. I am not just talking blood relatives but the support groups. My blood family does not want to understand what I go thru. Fear? Denial? I gave up on them and keep the ‘fine’ attitude up. they do not understand the ‘sleeping’ and knowing you are in discomfort enough to not really sleep. Then they do not understand my body tolerates no meds to help me sleep. Heck no meds period, even the last dose of antibiotics sent me into a tail spin. So when I post I try to laugh at what I go thru. I call it a new normal and it is mine! I own it! So, I even have blocked my blood family from reading my blog, I think it is kinda funny because they are trying to get nosy and ask when my last post was. Besides I don’t blog for them, I blog for me and any other person who might have Tarlovs and want an idea of life. I could go on and on, but I won’t. LOL
Good for you!
Someone called my attention back to the days when we used to have our daily experiences jotted down in our diaries and how therapeutic it was.
Thank you for being open and honest about your situation. Wishing you light and love always.
We all do the same because we can almost see others visibly flinch if we tell them the truth, fine is a very broad spectrum of a word, for a four letter one.
The thing is, I’ve always lived with chronic pain since I was little but I did not realize in the beginning what it was. Sometimes pain is hard to explain, especially as a child. I also thought everyone felt as fatigued like I did after an activity. I was surprised when I found out that was not the case at all. I don’t like to ramble on about my pain but it can feel like a weight off your chest when you have some people in your life that you can be open about it. It is a part of my life. I wish people would be more aware and understanding of chronic pain. Then we would not feel the need so much to ignore it. #letstalkaboutpain
I think when you’ve had pain since you were young, it really does become normal. And yes, you think everyone probably has the same fatigue etc.
My son lives with chronic pain from an Army injury. There are days I can tell he’s hurting and I get the same answer, “I’m fine.” Your post really help me to understand what’s going on with him. Thank you!
I’m glad my post has helped
It’s truly difficult for people that do not have chronic pain to understand the enormity of the situation. I’ve dealt with chronic pain since the age of 13, and 19 years later, there hasn’t been a single moment without pain. One of the theories I like to educate my friends and family is the spoon theory. I don’t think it will entirely open their eyes to the severity of our day to day but I believe it allows them a tangible perspective.
Yes, the spoon theory can be helpful, can’t it.
I have grown up living in pain, so I don’t know how it feels to be “normal.” But my condition is in my eyes, and I have a constant heavy sensation, sharp pains as though there is something on my corneas (there are lots of scars), and various other pain symptoms. Because it is not life threatening and I won’t go blind from it, health professionals have largely dismissed my cries for help and simply expected me to get on with it. So I did. And I can live a normal life. But it hurts every single day.
When health professionals ignore our cries for help, we get frustrated and sad.
Hi I live with chronic pain, for 25 years on opioids gabapentanoids antidepressants etc etc I am now nearly 2years without meds managing my pain with mindfulness and exercise! I now talk to gp students on the use of social prescribing. I presented my NHS England film “seans story, there is another way” at the House of Lords in June I also work with SW-ahsn pskqi and I’m a quipps pannel member. I now have my life back.
I tend to not talk about it because people don’t understand. But then I get tagged as lazy. It’s a no win.
I get that too.
I need this. Thank you all. My pain is intermittent and this last bout came out of nowhere and was the worst pain I’ve had. In bed for a week amd after a catscan, the doctor said there was no reason for pain. Then I read the catscan report and there were many reasons for pain. My online support group that discusses Medullary Sponge Kidney Disease agrees with me. They are my life line. The doctors could make me feel like I am crazy. It is so upsetting! Thank you all for expressing your reality. We need each other.
We definitely do need each other. I hope you can figure out what’s going on.
Thanks for reading and commenting.