chronic pain

Chronic Pain – Invisible Illness

This blog is inspired by a beautiful lady named Heidi who lives with chronic pain. Heidi responded to my previous blog and related an experience aboutthe response of others regarding her level of activity. This really struck such an emotional response with me that I have spent the last few days pondering over her experience.

Basically, chronic pain often, and quite aptly, is also known by the term invisible illness. I, like Heidi, have experienced situations where comments from well meaning friends and family can feel like a direct blow to the heart. The problem arises as chronic pain cannot always be visible, although when suffering a sudden flare up, there is no hiding the pain no matter how hard I try. I have had situations where I have walked into a bank, Centrelink and a hairdresser looking perfectly fine and had to leave in an ambulance following a major pain flare up after sitting and waiting for too long. Sadly, for those who had to witness my pain found the experience quite distressing. As a result my hairdresser no longer allows me to make appointmemts but rather prefers they call me when they have a ‘clear’ timeslot so that my sitting time is kept to a minimum. I try to do as much as I can independently and try to live as normally as possible making the most of the invisible illness luxury. It feels like a bonus at times to be able to get dressed up, putting on make-up, blow drying my hair and following a rest after this simple but exhausting routine. I go out into the big world and pretend I am healthy and well. It is during these times that people comment, “you look great, see you just need to get out more” or “if you just got yourself back to work it would take your mind off your pain”. At this point, I am literally hurting with their lack of compassion as much as I know it is hard for people who do not know what my illness entails, and the cocktail of daily medications that it takes to be out for a few hours. How could anyone understand the physical pain I am experiencing unless they have experienced living with chronic pain? I didn’t and don’t want to be one of those people who do nothing other than complain about pain or to let illness take over wvery aspect of my life. I want to be as much as part of society as I can physically manage.

For me, I take pride in keeping my chronic pain as ‘invisible’ as possible. But importantly i have also begun to help those who love and care for me most to understand my rare condition. Firstly, I collated as much information on my illness in simplified terms as I could and gave it to those who needed to understand my rare condition. This seemed to help. Secondly, I felt it was my fault that I would spend time out being where and when I was expeced, then go home to collapse for days on end as a result of this single outing, or ending up in an ambulance on my way to hospital to undergo treatment to get my pain levels back under control.

To summarize today’s blog, it is okay to let others know the truth on how you may be feeling physically, what could possibly cause a flare up of your condition, and what this could entail. At the same time, impress the significance of the fact that you are making the effort to be living life and certainly make the most of that wonderful and precious opportunity.

Health & Happiness To All.

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8 thoughts on “Chronic Pain – Invisible Illness”

    1. Hi Heather,
      it is nice to meet you also. While I have supportive friends and family I find a real connection with my online family, who ‘really’ understand the challenges that life with invisible poses. Sadly, i have had friends question me on the origin of the illness, state that you look fine etc and in general giving you that felling of misbelief, whihc is sincerely hurtful. It sometimes makes me want to stay behind closed doors. But as time progresses I know that these feelings will change too.
      Stay well, Health & Happiness, Narele

  1. “invisible illness luxury” – wow. This is an amazing piece of writing, right here. I, too, live with chronic pain. I think the worst is my little sister. She’s so young and so strong and she just doesn’t get it. When I quietly mutter that I’m not sure I can go bike riding today, or I’m not sure I can water ski this weekend, or I’m not sure I can play DDR right now, she smiles and pats me on the back and says “Sure you can!” with a huge smile. And it always breaks my heart.

    In a lot of ways, though, we do have a lot of luxury. There’s an article on Cracked (I usually hate that site, but this was good) on “The Joys that Healthy People Will Never Experience.” And it had a lot of good points – it is a luxury. So glad to have found this blog! Sharing on facebook and twitter now. 🙂

    1. Hi Rachel,
      Thank you for reading my blog, it’s always great to meet followers who can relate to life’s challenges. I soooo agree that invisible illness having positives accompanied by the negatives. I love nothing more than getting dressed up, applying some make-up, having the obligatory rest after this routine, then heading out to “pretend” life is normal. I never take these times for granted and consistently remind myself how fortunate I am compared to others with illness who may not be able to experience this luxury.
      I have two amazing children who are now adults. My pain psych calls them “good cop” & “bad cop” (cop is an Australian term for police). One child is very in tune with my illness and will often step in to say “should you be doing that?”, where as my other child I can sneakily say “I’m fine, let’s do something”, and we will rush out to make the most of our time together, but collapse in a heap once he has left for his home. I feel blessed to have two very supportive cherubs.
      I look forward to reading your blogs as it certainly sounds as if we have similar attitudes to life!
      Health & happiness, Narelle

        1. Thanks Rachel. I feel like the luckiest mother in the world. My children have had to witness me fight CFS for 5 yrs, then a serious car crash, followed by this current diagnosis. They witnessed me fight back from the first two situations as I loved my profession of teaching and working always made my heart smile. To not be able to find a cure for my current situation has made this fight so much more difficult. My strong nature and my inner determination cannot cure me physically this time round, but for me, what I have learnt along the way is that ‘things’ happen for a reason and this time I cannot resist the pain as sometimes it is just not in my control.
          So pleased to have found you too, kindred spirit.
          Health & happiness!

  2. Well, I am just speechless–I am so touched that you would write about me. I don’t even feel worthy. The kinds of experiences you’re writing about just feel so much more severe than what I suffer. I just want to hop a plane and come and give you a hug! But it really does make me feel like I have a special family out there of people who understand, so if one of my friends makes one of those comments, I know I can find support here. And believe me, when someone does make an insensitive comment, it is because I allow it; just like you, I want to seem independent and easygoing….I don’t want people to think of me as a pain in the neck. Now, though, I am so grateful to you for giving me a a friendship and a place for support. Thanks, so kindly! I’ve always been a big fan, so I much appreciate this and for that reason have nominated you for two awards (more information on my blog).

    1. Thanks so much Heidi. We all have are daily battles, and being strong & independent, sometimes can work against us as we try to maintain this even when ill. My one wish is that I could write more often, but suffer from foggy brain, which I have chosen over the alternative side effect of serious weight gain caused by one of my medications. I can smile somedays now about foggy brain as after experiencing both medications, I, Made the choice as to which side effect I could live with. Foggy brain isn’t costly, while weight gain was proving very expensive. I now have a wardrobe of clothes that spans several sizes, as I went up and down in size….Lol!!
      I feel wonderful knowing that we can offer support to each other. And after reading your experience of your ocean swim, I grew up by the ocean and I sometimes take this for granted, but have made it a goal when summer comes around in Sydney this year, to take the plunge. Sometimes the consequences are worth feeling “Normal” for but I have learnt, (the hard way 🙂 how to prepare for the before & after.
      Stay strong dear lady & keep in touch 🙂

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