There has been a quote going around on social media for a while now, suggesting ''pain is an illusion''. Whilst I could not find the origin of it, the idea has been around for years, often being chucked around on those programmes where a mad bloke is jumping down a mountain. However it seems to have been picked up by my generation, with cocky teens punching brick walls and trying to show no reaction to prove their point that pain is all in the head.
By some means, they are correct - pain is psychological - our nerves send signals to the brain which are then interpreted as pain. However, by no means should we disregard the physical suffering that anyone feels. But especially as someone with a chronic illness, encountering pain for most of the day, every day, it is really enervating to hear someone completely disregard my pain, by claiming it isn't real. The agony that I encounter from my comorbidities is debilitating as it is - I do not need someone else basically calling me a liar.
But what if I'm wrong? What if my pain truly is not real, and maybe if I change my way of thinking, maybe then I can live a pain free life. To determine this, I spoke to fellow JIA sufferer, Kabir. First diagnosed with Juvenile Idiopathic Arthritis psoriatic subtype in 2021 at the age of 14, and now more closely showing symptoms of Enthesitis related JIA, it is safe to say Kabir has suffered with the disease for a very long time, so has his fair share of experiences living with a chronic condition that causes pain.
I asked Kabir to choose three words to describe the word ''pain'', of which he chose stabbing, frustrating and opportunity. Whilst there are many types of pain, stabbing is the one that is often depicted as the ''worst''. As it suggests, a stabbing pain feels like a knife stabbing you, over and over. Surely being actually stabbed would feel so painful, so the pain linked with arthritis must be real if it feels like being stabbed. Pain is also very frustrating, whether it be trying to find the trigger, trying to treat it, or trying to get on with your day-to-day activities. However, the word opportunity may come as a surprise to some, but the pain can be used to be turned into something positive i.e. me and Kabir both use our diseases to campaign for awareness and support, with Kabir even helping to design an app to better help manage chronic illnesses (More info on this at the end of the blog!!).
I then asked Kabir when the last time he had a ''pain-free'' day. Shockingly he responded saying he has experienced pain every day since 2019, when he first started getting symptoms of arthritis. That's 5 years of feeling pain every day! My experience is also very similar, being that I too have had pain every day for 5 years, be it in my back, neck, wrists, ankles, knees or other joints in my body. If pain truly is an illusion, then how come me and Kabir first started getting lots of pain when our arthritis symptoms began, but before our diagnosis? Because it's easy to say that it's all a placebo and we feel pain because we think we should be in pain from our JIA, but we started feeling pain before even knowing we had the condition!
After being asked if anyone has ever disregarded his pain and how it made him feel, Kabir offered some very wise words of wisdom. He responded with ''I have, initially when I got sick it was quite a common occurrence. It frustrated me deeply because I think when you're first diagnosed, you can't see anything that is not your condition (for good reason) but as time goes by you learn to adapt and overcome. While I may feel that now I ''get on with it'', it still doesn't make it right for others to tell me that. We work so hard as patients and it's something that others won't ever see.'' Kabir's response is 100% valid and I agree completely. The first few weeks/months of diagnosis is always the hardest - I think this is increased when you are a child/young adult as you have your whole life in front of you, and it feels like it has been stripped from you. All you can think about is what this means for the future, how others will view you, and how you will manage. To then have someone think that it isn't a big deal is not just frustrating, but also quite humiliating - it makes you question if you're overreacting, and if it really is that serious (which it definitely is!!). However, after time you do learn to ''get on with it'' in that you find medications to help, triggers to avoid, and ways to not overwork yourself. But, it is down to you to determine the sincerity of your disease and the pain you are in. Nobody knows what you go through, and what you experience, so therefore nobody can tell you how to live your life.
Finally, Kabir gave some words specifically for those who invalidate our pain. He said he wants those people to live just one day in the life of someone with a chronic illness. To try write a school exam with stiff fingers, to have a reaction to a medication/injection and then deal with the side effects. To have to inject yourself on special days like Christmas. To know that the conditions we deal with are real. Regardless, he very correctly says that ''you will never know what someone is going through until you live their experience.'' As cruel as this may sound, how on earth can someone judge your life story, when all they see is a small glimpse of it. I personally share a lot on my Instagram story, but what my followers see is only a very small glimpse of what I encounter. To disregard someone's feelings, is like taking a book and burning it. Whilst I wouldn't wish this disease on my worst enemy, I wish that the doubters and non-believers could spend just one day living our lives. And though every single person with a chronic illness has a different story, we all encounter pain, grief, depressive thoughts, anxiety and emptiness.
To conclude, our suffering that we endure every day, is definitely real. How can you say that it isn't, after everything we go through? It might seem like our conditions is just a mild inconvenience that can be resolved with a click of the fingers, but it is wayyy more than that.
A huge thank you to Kabir for giving his time to feature in this blog. If you too would like to share your experience and help ''debunk'' another ''myth'', please do get in touch with me. If you'd like to find out more about Kabir's story, feel free to get in touch with him via email kabir@empowerapp.com . Alternatively, check out the app he is helping to create that empowers you to take control of your chronic health conditions at empowercareapp.com
Comments