Growing up I was always a very affectionate person. I often relied on a good old fashioned hug when I was feeling down and out. Or a simple squeeze of my hand to reassure me that everything was going to be okay.
But as many people who suffer from fibromyalgia know, the widespread pain caused by the disease makes being touched unbearable at times and simply impossible.
These days I not only isolate myself from most contact with others, but my closest family and friends seem to be afraid of touching me in any way shape or form for fear of hurting me as well.
I know most people mean well and are looking out for my best interest when they try to keep me at arms length for fear of hurting me. But that doesn’t mean it doesn’t sting a little to feel like I’m being handle with kid gloves, even by my own husband. Sometimes he will give me a hug, but it’s almost like he’s barely got his arms around me. He’s afraid he’s going to squeeze me too tight and I’ll end up hurting for the rest of the day.
I know it’s done with love and good intentions, but I want to feel normal and have him hug and lift me up like they do in the movies. But that’s not my life.
My life is giving people permission to hug or even shake my hand. It’s like extending an olive branch — letting others know if and when it’s okay to have any kind of contact with me and how much is too much.
I know my limits and excuse myself from certain situations. Like when I meet men, I don’t shake their hands because they tend to be too firm. Once, I shook someone’s hand and I had to wear a brace for 2 weeks because of it.
I just never know what someone who doesn’t know me might do. I might seem rude or stuck up because I don’t like to explain why I won’t shake hands. So I politely decline.
I feel as though the only people who need to know the reason why I have to keep my distance are those closest to me, because they’re the ones who have taken the time to truly understand my situation.
When I tell strangers I have fibromyalgia they usually have a blank look on their face and answer with “Oh.” Then if I ask them if they know what it is they always say no. Most people would rather stay in the dark than to be informed. I have no problem explaining it, but it becomes frustrating when you try to educate others about something so close to home and they could care less.
I’m all about advocacy, but unless it directly affects someone they don’t seem to care or want to give you the time of day.
Fibromyalgia is more common than people think and the pain it causes can’t be described in words. It makes you weak, tired, irritable, and causes widespread pain that remains constant. Your physical contact with others diminishes and your ability to have a normal life goes out the door.
Arlene Grau lives in southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.
The information in this column is not intended to be considered as professional medical advice, diagnosis or tr toeatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.