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Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Close Strange Encounters: Raynaud’s and Religion

Divine healing

“I thought I was beyond being able to be shocked. I’ve seen everything. But this case was in a class by itself.”

- David French

“Let my son put his hands on you and pray over you; he has healing powers!” That was probably one of the last requests I expected to hear as I made my way from my car to the Verizon store earlier this evening. At this point I’m fairly accustomed to strangers asking me if I’m cold. In fact I’m actually more used to strangers asking and commenting on my possible temperature than I am fielding questions from those who are extremely close to me. I suppose my family and close friends who know I have Raynaud’s and are accustomed to me dressing warmly, even in the summer heat, just don’t even consider asking anymore. Now that I’m thinking about it more my Mom is the only one who seems concerned about noticing if I seem cold, asking about it, and trying to make sure I’m warm enough. Another close friend who helps me with horse training also will ask if I’m cold and seems concerned about me taking care of myself. They are really the only two though. I don’t know if my other immediate family and good friends just don’t think about it, or are so accustomed to me being cold, or assume if I’m cold I’ll say so or do something about it and they don’t want to bother me, or (shudder), they’re just so wrapped up in their lives and whatever is going on or the conversation we’re having that they don’t even think about it either? Now that I’m analyzing it that seems like a topic for a whole other blog post and questions that I’m not sure I can answer unless I ask these people in my life to find out from them.

But I’m not surprised anymore if complete strangers see me on the street, in a store, where ever and ask me if I’m cold. Once in a while they have a tone of curiosity and concern. More often though they seem somewhat shocked or startled. I’m used to feeling cold by now and dressing in warm layers, even in the summer. Even long before I knew I had Raynaud’s I was dressing for my tendency to run cold, telling people I had bad circulation and was “cold blooded” when they asked. The last few years I’ve become more accepting of the fact that me being cold is due to my Raynaud’s- frustrating that I’m stuck with it but grateful it isn’t worse all at once. Strangers seem to react strongly to me though, especially seeing me dressed warmly in my layers when it’s hot out in the summer. What people who don’t struggle with Raynaud’s find hard to understand is a warmer climate or summer season really only helps us so much. As much as I hate and dread winter there are a few aspects of it being frigid outside that make it easier for me. First getting dressed and choosing what to wear is simpler because I really can’t over do it with the layers and warm clothes. Dress for the arctic and I’ll be good to go. If it’s warmer inside I can always take a layer or two off. But with how severe my Raynaud’s is I have trouble removing my coat inside even when it’s warm. Because taking of a layer will ultimately make my temperature drop unless it’s pretty much a sauna so it’s much more comfortable to leave my coat on inside, try to keep my temperature steady, and avoid and attack. That makes socializing uncomfortable though because people will literally tell you to “take your coat off and make yourself at home” when you’re inside.

Explaining that you’re actually much more comfortable with your coat on and then launching into explaining the whole Raynaud’s reaction is not the most fun way to get to know someone or make a first impression to someone you don’t know well. Plus trying to interact with people you don’t know well with your coat on can be awkward. Maybe that’s part of why strangers will look at me in disbelief when I’m dressed in my sweatpants (in my defense they were cute, stylish, and pink, not grubby old sweatpants) Ugg slippers, and winter coat when it’s about 80 degrees outside.

I do look awkward dressed that way in the summer, just like I do indoors. So when the gentleman with his son, who must have been about 9 years old, saw me exit my car and approach the sidewalk where they were walking tonight on my way into Verizon I’m sure it was a little surprising. It’s slightly surprising to me though when strangers see me dressed warmly in public in the summer and they seem to lose all sense of tact and social grace and gawk at me almost confrontationally saying directly to me “are you cold?!?” Or “aren’t you HOT?!?!” I can think of a million things I could say back now but in the moment I want to be polite. Also, some people who I’ve told about my Raynaud’s during this kind of encounter that’s a little bit too close and strange to have with someone you don’t know at all, has been positive. If they don’t know what Raynaud’s is they learn something and seem to grow from me explaining it to them. So I try to be kind, diffuse the awkwardness, and tell them yes I’m almost always cold because I have Raynaud’s condition. If they know what it is they seem to understand and then we can go about whatever we were doing in the first place.

Tonight however, was a whole different type of encounter. Something I’ve never experienced before, I was not prepared for in any way, and left me shocked, puzzled, and conflicted. I’m still processing it, not sure how to feel about it, and not sure about my reaction. I would love to find out if other people with chronic conditions, disabilities, illnesses, have ever dealt with the same situation, how you reacted, and what advice you might give for handling something like this encounter I had with a stranger that was bit too close for my comfort about my Raynaud’s. When this gentleman saw me in my winter garb from almost all the way across the street he did a double take, glancing at me and then glancing away. His eyes widened and he immediately looked right back at me and half shouted due to the distance we were away from each other “aren’t you hot?!?” This approach did surprise me a bit because usually when strangers ask me or comment on my possible temperature we’re interacting somehow. They’re helping me find something in a store for example. I’ve never had someone see me from across the street and shout at me. I kind of smiled and must have looked slightly surprised saying “well I have Raynaud’s condition so I’m always cold” as I walked to the sidewalk where the gentleman and his son were on my way to the Verizon store. He responded by asking me “what’s that?” And I did my best to explain my condition as I was walking near them on the sidewalk. After I briefly explained he said “I’m so sorry, that’s awful” as he grabbed his son’s shoulders while we were all walking near each other in the same direction. “Let my son put his hands on you and pray over you; he has healing powers,” he said earnestly as if he truly believed his son was going to cure me right there on the spot. I was absolutely gobsmacked for many reasons. His son didn’t say a word, just kept walking next to his Dad near me. My surprise must have been evident all over my face as a stammered politely “ummm no thank you. That’s nice of you to offer, but I’m ok.”. He insisted again as we were all walking towards the entrance to the Verizon store and I said a bit more firmly “no I’m fine, it’s genetic, and I’ll be ok”. Luckily I saw my Mom waiting on the bench to meet me just past the store and I gave a half surprised awkward smile and headed towards her. The gentleman and his son pulled the door to the store open and he said as they walked in “well ok if you’re sure” with obvious disappointment. My Mom saw the look on my face and ask right away “what happened??”

I’m such a people pleaser, always want to be polite, and I was taken by such surprise. I guess I responded with my first instinct. But I can’t help playing the situation over and over in my mind and wonder- should I have told that gentleman that he was being quite forward, presumptuous, and even rude? Should I have told him to mind his own business and not single someone out for something different about them and make them feel broken or awkward? I’m completely baffled by this encounter and welcome feedback. Has anyone else had a similar interaction as a result of your illness, condition, disability, or difference? How did you handle it? Or simply what are your thoughts and opinions on the situation? I am hoping to take the responses and write a follow up post. I believe there are several different issues at work during this situation that need to be addressed and a dialogue would be a wonderful way to bring different perspectives and a greater understanding to the larger impact of an interaction like the one I had tonight and the complex societal standards that factored into it happening at all.

Until next Friday,

Amy L.

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