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.