Young, Sick and Invisible

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

Hindsight’s Insight: I Was NOT “Just Cold”

Snowy stream

Forgive yourself for not having the foresight to know what seems so obvious in hindsight.”

- Judy Belmont

Some of my earliest memories involve me feeling extremely cold. During the earliest one I was only about four or maybe five years old and my Mom would take my sister and me to the mall. Going to the mall with my Mom and sister will always be one of my favorite memories from growing up; the Disney Store was there, and so were the water fountains with the balloons that inflated and deflated. There was a tiny shop featuring food you would find at a carnival or amusement park. Icees and soft pretzels with a tub of that fake type cheese I loved, but that makes me gag a little bit thinking about now. I would gobble it all down. The same thing happened every time though after I drank the Icee- a shocking chill traveled through my body and my lips would turn purple. Not from the Icee either because we always drank them through the straws and I don’t remember my sister’s lips ever doing that like mine did. My whole body would suddenly become freezing and it was a struggle to get warm again. I never remember my sister getting cold like that either and we had the same Icees. Even as a young child I loved cold food and drinks, but they made me freeze up all over even in the summer.

As I got older I used to repeat the phrase “hindsight is always 20/20” to myself all the time. I’m an over thinker, a worrier, an introvert, an empath, and a perfectionist- extremely self conscious and self critical. So I often get down on myself for choices I made that turned out to be errors in judgement, mistakes, and sometimes feel completely stupid. However, as I’ve gone through more in life and hopefully grown wiser as well as older, I’ve gradually realized that hindsight is not exactly 20/20. That conclusion is too rigid, too black and white. It would be easy to use that phrase to make me feel better about the past, but in reality hindsight is still not perfect and can be clouded by factors that influence our present situation. Hindsight does create new insight into the past though. We can see things we didn’t see before when we look back and therefore arrive at a different understanding because we know a lot more now that we did then. That’s how I’ve come to view my past struggles with Raynaud’s.

I didn’t know what Raynaud’s was or that I had Raynaud’s until I was 32, around the end of winter 2016. Although I struggled with the symptoms almost silently for so many years, finding out what it was turned my entire world, including my memories, upside down. Hindsight’s insight- I was having Raynaud’s attacks when I froze up like that as a young child. Being cold and desperately trying to find ways to stay warm or to warm up have been an almost subconscious part of my life and “normal” for me for so long. Yet knowing now that my being cold was due to Raynaud’s is both a relief and devastating at the same time. It’s a relief because I don’t have to hide it anymore, pretend to be ok, try to make jokes and brush it off when people ask questions. I don’t like anyone to worry about me or not to be “normal” and capable. I never wanted to be seen as a negative whiny complainer. I’ve always been an extreme people pleaser and want everyone to like me. My mind was always telling me people don’t like a complainer and don’t enjoy being around someone they have to worry about. Looking back now I realize I even this way about my family. When I was four I fell and smacked my head on the side of kiddie table when my family was enjoying one of my favorite shows. I looked up stunned and apologized. That’s how deeply engrained never wanting to upset anyone is for me. I also though me getting so cold must just be bad circulation. Since I come from a medical family we were always hyper precautious about health issues. I think I figured one of the doctors I’d seen or tests I’d had done would have picked something up if this “being extra cold” wasn’t just a quirk. But now I know definitely is NOT just a quirk, which in a way is good because now I can deal with it and I’m the type of person who doesn’t like not knowing things.

Even though learning I have Raynaud’s has been a relief it’s been absolutely devastating too. For a while I used to model. My feet and hands would go numb and throb during runway shows and photo shoots. That part was miserable, but I loved wearing the amazing outfits and getting my hair and make up done. I could be someone else for a while. It was fun and I felt confident. I didn’t care what anyone else thought. I’m not tall enough and only a tiny percent of people who try modeling make much money doing it, but I did enjoy it. Now with how bad my Raynaud’s is I can’t risk having attacks like that and can’t handle being that miserably cold anymore. So I know I could never really do modeling again. That’s just one tiny not even serious example of how knowing I have Raynaud’s and trying to deal with it has limited my life.

I worry constantly about the possibility of developing chilblains, ulcers, or that an autoimmune condition might come to the surface. I also have severe anxiety, depression, and PTSD so my mind will take one small thing and go immediately to the worst case scenario. Raynaud’s constantly affects my life every day from littler things like making sure I change my clothes in front of my space heater, to things that hurt me deeply like not being able to go swimming with my precious little niece. I have many memories of being so cold and frustrated that tears would run down my face uncontrollably, of being painfully cold at sporting events, tripping on the stairs and scraping up my hand and knee because my foot was numb during an attack. I did things I didn’t tell anyone about to keep warm until I was diagnosed like using a hair dryer to blast hot air under my sweatshirt to warm myself up. Sometimes I’d wear toe warmers stuck to myself on my chest and back under my shirt to keep warm. I feel relieved to what it is now and why I was so cold. It’s also been nice researching and finding helpful ways to stay warm and doing better with not having as many bad attacks. I don’t think I realized how uncomfortable I had been and how nice it feels to be warm until after I was diagnosed and started really protecting myself. Being so cold most of my life often scared me but I didn’t want to say anything about it. Once I got warmed up again I was ok and I didn’t want to be a problem or a complainer.

Even though having this Raynaud’s diagnosis is a relief, it’s also deeply depressing because this condition isn’t going away. It could get worse and won’t get better. All I can do is manage it the best I can. I know there are people dealing with much worse, more devastating, and more debilitating conditions. I’m beyond blessed and grateful for the good things I have in my life and that this condition isn’t something worse. It still feels like I’m mourning a loss though and I have many scared, sad, angry frustrated moments. I think having empathy, trying to understand each other, being kind to each person’s struggles is so important in life because everyone has something they’re dealing with. Finding people who understand and are willing to share their stories has helped me cope better with my Raynaud’s and other conditions I have. So I’m trying to be brave and put my experiences out there to hopefully help someone like others have helped me.

So Bethany is graciously allowing me to be your Friday blogger and share my experiences with you concerning Raynaud’s and other parts of my life. Because Raynaud’s may be part of who we are and unites us, but it isn’t and doesn’t have to be the only thing that defines us. Please give me feedback, any requests, and ask questions if you’d like. I’m nervous to put myself out there, but I’m so excited and grateful for this opportunity.

Until next Friday,

Amy L.

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