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Why I'll Explain My Pain for Pain Awareness Month

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Pain awareness is so crucially important. Not just for the people who have a chronic illness, rare disease or disability to feel validated and understood, but also for the people who care for us.

It helps our loved ones better foresee our needs without us having to ask. It makes our healthcare providers advocate for more appropriate lines of treatment or medication.

Pain awareness can reduce stigma and dramatically change the way chronically ill people are viewed within society.

When you have told somebody about your condition, how many times have you then been told that someone else they know has a chronic illness too? If you’re anything like me, it will be a lot.

Now how many times has making that comparison between yourself and a complete stranger been misinterpreted as being understanding of your situation? Probably about the exact same amount of times.

Unfortunately, the fact that their step-mother’s, granddaughter’s nursery teacher has gone into early retirement because of severe arthritis really bears no resemblance to the daily struggles of someone with Crohn’s disease, for example.

We can’t forget that when people say these things, they are trying to engage in a complicated discourse to the best of their potentially limited abilities. But the only time this statement has ever been helpful to me is when I had taken the time to truly explain my symptoms, and also the way they make me feel. Not only that, but the person I was then about to be compared to had done the exact same thing.

Between us we had created a brand new ally that had been clued in on the secret struggles of what it means to live with a chronic illness. And I say secret because often there are things we will only say to our doctor, or not even admit to ourselves for fear of being misunderstood. But through honest communication, this person’s vocabulary had been broadened to include terms like “pacing” and “fatigue” in the correct sense that we would want them to be used. They were able to recognize that two people who had similar conditions could exhibit in many different ways. This person will now hopefully go on to set a precedent of listening to the specific needs of the individual, because of this awareness.

I’m not here to tell you that stigma and misunderstanding are going to be erased overnight by a little talk with everyone you meet. That’s neither possible nor practical. It’s a slow, hard slog and you certainly won’t win every battle. But I am going to tell you why I think explaining your pain for pain awareness month is important.

We need these allies! We need them in our government, our schools, the workplace, the supermarket; everywhere! But they are not created by magic. Nobody really wakes up one day and chooses to educate themselves about a condition they’ve never heard of just because they can. Be honest, had you even heard of your own illness before you were diagnosed? We deal with a lot of extraordinary medical terms and unusual side effects on a daily basis, so it’s easy for us to forget that this is not the case for everyone.

It’s up to us to create mighty allies to stand shoulder to shoulder with mighty warriors. That goes for both physical pain and psychological pain. Both are real and the more we explain our needs, the more equipped society becomes to create a world that better caters for all.

Now, if you’ve got this far and the entire time you’ve been thinking “that’s just not for me” or “I’m not strong enough to do that,” then this post is still for you because there is an important flip side to this coin.

Bear with me.

Back when the “me too” campaign was at the height of its online virility, helping to expose the widespread nature of sexual abuse, I was only just beginning to come to terms with my own assault a year earlier. Everywhere I looked, incredible people were telling me to be brave, to open up and share my story and all that did for me at the time was make me feel weak and ashamed for not feeling strong enough to do so. Almost another year down the line, I can look at myself in the mirror and know that those things aren’t true. It didn’t make the campaign any less vital or make me weak, but it wasn’t right for me to force myself to be exposed at that time in my life.

We all have our own journey and our pain is a part of that. It may be with us for the duration or maybe it will leave us a little further down the line. But if you look around you during pain awareness month and feel like you’re unable to take part by explaining your pain, don’t let that leave you feeling weak.

You have to put on your own oxygen mask before helping those around you. The people who are speaking up right now have already done so. If you’re almost there and this post is the little push you need to start work on creating your own allies, then that’s fantastic. But if you feel like you’re not quite ready, then that’s perfectly OK too.

It doesn’t mean you won’t be in the future.

My journey has included pain and sickness for the last 13 years. I’ll explain my pain for pain awareness month because I feel comfortable with doing so. I’ll create mighty allies because I’m at a point in my life where I need more aid, and more understanding. All the help I’ve got now, I have because of the efforts of the people who have explained their pain and fought this battle before me. Today I’ll do it for both of us and one day – only when it feels right – I hope you’ll do the same.

Getty Image by HbrH


Originally published: September 13, 2018
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