I remember that when my back started to hurt a whole lot, my first reaction was panic, disbelief and confusion. I hadn’t a clue what was going on with my body, what I was feeling, let alone how to fix it. All I knew for sure was, that something was really wrong.
So when overnight my body started to be in debilitating pain, I had to explain this to others. Unfortunately not everyone has the empathy gene and even a lot of health care specialists didn’t believe I could be in so much pain. They couldn’t find an answer, so I guess their conclusion was, that the pain then wasn’t there. While I was very sure it was. I wish in wasn’t.
While talking to these health care specialists and people close to me, I noticed I found it hard to explain what I was feeling and how it was affecting my life. I needed tools. Luckily I am no stranger to Google and I was really desperate to understand my pain and also for others to understand my boundaries. So these are some tools that helped me along in this process.
Through this app I could track my pain. They also offer some keywords to describe your pain, which helped give me some directions in the type of pain I was having. Also by tracking my pain every day, I could more easily find patterns in occurrence of my pain or what would affect it. Within the app, there is a great community with peers asking tips and giving advice through their experience, which helped me a lot in understanding my pain and it also didn’t make me feel so alone.
During doctors visits, they would ask me to rate my pain on a scale from 1 to 10. I noticed that this scale wasn’t really representing my pain properly. Some days my pain was worse than others and after a while I got used to certain pains and I dropped in the number I’d ascribe to it. For a long time my pain was chronic and the fact that it was chronic was mostly exhausting. So I felt relieved to come across the International Chronic Pain Scale, which goes more into the affect pain has on a daily life. This way I had a scale that was useful to me to explain my pain to others.
The first time I read this theory, I cried. It hit home. Finally someone who understood the effect of pain on daily life and someone who offered a way to make something as abstract as pain on a day to day basis become more visible and relatable. Just read the blog post yourself.
It helps to read other people struggle with the same issues I was struggling with. Like people’s perception of how I was dealing with my pain and daily struggles that come with chronic pain or chronic illness, as well as ignorant health care specialist or relatives. Besides more general blog posts, there are also posts that are more specific to an illness. And the lovely thing is, that this blog is for and by people with disability, disease and mental illness. So if you want to share your perspective, you can.
Quite general, but let me explain. It depends on your type of affliction, where you can find your peers. I practise yoga and have scoliosis and I noticed that through certain hashtags I could find others with the same interest. I also know that there are groups on Facebook that have a specific focus. Last but not least, I love to be on Pinterest for information and inspiring quotes and motivation. Just give it a go.