Everything Hurts

Communicating Your Condition

Amanda VinciComment
 
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One of the biggest difficulties that comes with your medical condition is expressing to others what it is your going through. Explaining your pain to non-sufferers is no easy task, and can exhaust you in a matter of minutes. (I know, I know... most things exhaust you in a matter of minutes).
 

 
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First things first, talk about how it feels. Introduce your condition(s) – "I've got [xxxxxx]... it kind of feels like: electric shocks throughout my body, how most people feel after walking 10 miles, like I get hit by a golf cart while sleeping every night...". You can be serious, you can be funny, but always be honest. Adding some sarcasm and imagination to your explanation helps to lighten up the conversation. Get a good read of who you're talking to, and try to put it in terms that they're familiar with.

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When we tell someone about our condition, there's a good chance their reply will be "but you don't look sick." Nothing infuriates someone with an invisible illness quite like being told they look perfectly fine. The pain we feel may not be shown on the outside, but it's there every day, and it's real. It is easy to lose your temper or tear up when you hear someone downplaying your pain based on how you look. Remember to keep your composure – you have a job to do! It's up to us to educate others about our illnesses. Your pain may be invisible, but you are not.

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When I was first diagnosed with fibromyalgia, a common misconception amongst doctors and caretakers was that this pain was entirely mental. I remember being 15 years old, sitting on the exam table as the doctor chatted with my mom as if I wasn't in the room. "She's seeking attention" he said. What 15 year old wants to be in pain every day? Who makes that up?! I yelled back at him. Unfortunately, he wasn't the only one that prescribed to this notion that the pain was just a manifestation of depression and anxiety. Thankfully, the amount of professionals that still think this way are few. No matter your condition, you're bound to encounter someone that will tell you that if you believe you'll feel better, you will be magically healed. This is bullshit. We know this is bullshit. Being in pain can cause you to feel depressed, but you are certainly not feeling pain due to depression. Let it be known: it's not all in my head.

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Being the "sick one" out of your friends and family often leads to feeling left out. It's easy to want to lock yourself away and be alone with your pain, but unsurprisingly, sharing a bit of your day with someone can feel good – even if it is just mentally.  Let your loved ones know that although you may not feel up to doing something, you definitely wish you could. More often than not, your friends will stick by your side and are willing to help in any way they can. Explain your limitations, be open with what you physically can and cannot do. They want to go camping? Uhm, maybe you'll skip that one. How about a night in watching Netflix instead? As time goes on they'll have a pretty good understanding of your condition, and acceptance of who this new you is.

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The most important thing to tell others when talking about your condition is that you're still you. your illness does not define you, but is part of what makes you great. You'll always be the person they know and love, and will now respect in a whole new way.

Go forth and tell your spoonie story with pride.