Last night, our Peer Mentor boss took the team to an outdoor school called Echo Hill. We went to this out door school in August to partake in some team building exercises. This time we went at about 6 pm and got to watch the sun setting on the Chesapeake. We played some games and went on a night hike, ending the evening on the beach cooking s'mores. It had every ingredient for a lovely fall night.
But, my foot still hurts whenever I walk on it and my heart and head aren't too good with the whole hiking thing. I was managing fairly well but I had to take breaks to sit and avoid syncope episodes. I was with Alex, a good friend of mine who is also a peer mentor, and he helped me up and down every time I needed a rest.
When I stopped for the longest period of time, the guide came back to me and asked if I was okay. I told him that I had a heart condition-cause explaining my disability isn't always my favorite conversation and it often doesn't even help clarify anything-and he told me to rest whenever I needed. I just briefly explained that hiking uphill was hard on me and I had to sit before I fainted. I felt no obligation to tell him anything else. Then he gave some well-intended but complete unsolicited advice about hiking with respiratory issues, as if that is what I had just told him I had. He made a few remarks about getting used to the strenuous activity as if my condition was a result of inactivity and being out of shape. I was floored. Had someone reworded my explanation while it traveled from my mouth to his ears? How could he have completely misunderstood what I said?
This was one of those moments when I had to remind myself that my feelings and my reactions to people's word are valid. When interactions like this happen, I immediately shame myself for getting so easily offended by small, seemingly nonaggressive remarks. He means well and he doesn't know that he's being offensive or insensitive, so my reaction of being hurt and embarrassed is an overreaction, right? I have no right to take his words so personally. That's my inner monologue. At some point, I become just as angry with myself about my sensitivity as I do with the person who has offended me. So I end up ashamed of my overly sensitive mind as well as my broken body; by the end of the interaction, I'm the one feeling apologetic and inadequate, not the offender.
But I had to remind myself that those feelings are valid. My feelings and my reactions to insensitive words are valid. I am valid.
When we got to the end of the hike and reached the dark beach, the guide came over to me and started a conversation about lessons he has learned while on the job. He told some stories about varied pain tolerances of visitors and experiencing the outdoors with people who had never experienced it. The whole time, I was worried where his point was going. I had a hunch.
He finished with a story about a girl who went on a week trip with one of his groups. On the last day of the trip, she got stung by a jellyfish. She cried and wailed and yelled in pain for over an hour and the guide was very worried. He was scared that she was having an allergic reaction or something because he was so surprised by her reaction to the pain. He assumed she must be in more pain than just the sting; something must be very wrong. Then he asked if she had ever been stung before, she hadn't. So he told her, in a comforting way, that the pain would end and it wouldn't hurt soon. Supposedly, this calmed her immediately and she finally relaxed.
His point? According to him, the fear of never-ending pain is worse than the pain itself. He went on about how you can handle any amount of pain, as long as you know that it's going to end. He ended the story with "So just remember, uphills end. Pain ends."
Maybe to a healthy person, this seems inspiring and comforting. Maybe to a girl who just got stung by a jellyfish, who will fully recover in a couple hours, this is helpful. But to a 20 year old girl who has a chronic illness with no cure and no explanation or prognosis, this is hurtful. This man, knew nothing about me or my condition. I didn't tell him that my condition was chronic or incurable or underfunded for research or barely understood by medical professionals. He knew nothing about that. But he still spoke as if he did.
I took a walk on the beach away from the group and let myself feel what I was feeling. It's been a frustrating week. I've felt the disappointment of making progress and then watching it slip away. I've felt the frustration of watching everyone else my age hike effortlessly through the woods while I paid more attention to my oximeter than the beautiful nature around me. And then, I listened politely to a man who knows nothing about my life tell me, with unwarranted certainty, that my struggles will end.
I know, deep down, that my struggles will eventually become more manageable. I know that I will have better days. But I also know that the only thing that all my doctors agree on is that this isn't going to go away. Dysautonomia is chronic. Whether I am fainting once a day or once every few months, syncope will always be in the back of my mind and every single decision I make for the rest of my life, will be affected by my chronic illness. My uphill will not end, it will just vary in how steep and slippery it is.
This man doesn't know my story and he can't see my inner thoughts so he doesn't know how much effort that hike was for me. He doesn't know that it takes me 20 minutes to get out of bed because I have to do it so slowly and carefully to ensure I don't faint. He doesn't see me take my BP 12 times a day or monitor my heart rate on my watch every time I stand. He doesn't see me cautiously and fearfully take note of every sharp corner and hard surface in a room. He doesn't know how meticulously I measure my water and salt intake. And he doesn't know how different the words "Just remember, uphills end. Pain ends" mean to someone who has an invisible, chronic, incurable illness. So I can't hold that against him, I can't blame him.; but that doesn't mean that I can't feel the pain it causes or that the pain is not valid.
I've been trying to make a conscious effort to not allow myself to be ashamed of my emotions and my responses to my situation. When someone says something small but it upsets me, I know that it is hurtful because it highlights and triggers pain that comes from a bigger and stronger source, but it is still hard to not let myself invalidate my own feelings. I have to remind myself that my emotions are not trivial or unjustified. I have every right to feel the way that I feel.
I know that reaching a point of self-assurance with my own emotions will be a long process. In the last few months I have taken steps in the right direction but I know I'm not there yet. I am comfortable calling some people out on their insensitive jokes and I have gotten better at openly talking about my feelings during this journey, but I'm not where I want to be yet. Maybe in a year I will have the confidence and equanimity to address situations like this. Maybe I will be able to speak with full composure and say, "That was ill-informed and insensitive." Maybe I will be able to act as an agent for change in the way people view and talk about invisible, chronic illness.
That man, who was a very nice guide and hospitable host, walked away from that conversation thinking that what he said was helpful and encouraging. He has no idea that it hit me in the gut like a sucker punch. He has no idea because I didn't tell him. I politely accepted his words and let him move on with his day because I didn't feel like my emotions were valid enough to bother him with. One day, I will tell the offender that he has offended. I will unapologetically legitimize myself and take that conversation as an opportunity to explain a perspective that the offender doesn't have so he has the knowledge to not offend again. One day, I will capture that conversation.
But, my foot still hurts whenever I walk on it and my heart and head aren't too good with the whole hiking thing. I was managing fairly well but I had to take breaks to sit and avoid syncope episodes. I was with Alex, a good friend of mine who is also a peer mentor, and he helped me up and down every time I needed a rest.
When I stopped for the longest period of time, the guide came back to me and asked if I was okay. I told him that I had a heart condition-cause explaining my disability isn't always my favorite conversation and it often doesn't even help clarify anything-and he told me to rest whenever I needed. I just briefly explained that hiking uphill was hard on me and I had to sit before I fainted. I felt no obligation to tell him anything else. Then he gave some well-intended but complete unsolicited advice about hiking with respiratory issues, as if that is what I had just told him I had. He made a few remarks about getting used to the strenuous activity as if my condition was a result of inactivity and being out of shape. I was floored. Had someone reworded my explanation while it traveled from my mouth to his ears? How could he have completely misunderstood what I said?
This was one of those moments when I had to remind myself that my feelings and my reactions to people's word are valid. When interactions like this happen, I immediately shame myself for getting so easily offended by small, seemingly nonaggressive remarks. He means well and he doesn't know that he's being offensive or insensitive, so my reaction of being hurt and embarrassed is an overreaction, right? I have no right to take his words so personally. That's my inner monologue. At some point, I become just as angry with myself about my sensitivity as I do with the person who has offended me. So I end up ashamed of my overly sensitive mind as well as my broken body; by the end of the interaction, I'm the one feeling apologetic and inadequate, not the offender.
But I had to remind myself that those feelings are valid. My feelings and my reactions to insensitive words are valid. I am valid.
When we got to the end of the hike and reached the dark beach, the guide came over to me and started a conversation about lessons he has learned while on the job. He told some stories about varied pain tolerances of visitors and experiencing the outdoors with people who had never experienced it. The whole time, I was worried where his point was going. I had a hunch.
He finished with a story about a girl who went on a week trip with one of his groups. On the last day of the trip, she got stung by a jellyfish. She cried and wailed and yelled in pain for over an hour and the guide was very worried. He was scared that she was having an allergic reaction or something because he was so surprised by her reaction to the pain. He assumed she must be in more pain than just the sting; something must be very wrong. Then he asked if she had ever been stung before, she hadn't. So he told her, in a comforting way, that the pain would end and it wouldn't hurt soon. Supposedly, this calmed her immediately and she finally relaxed.
His point? According to him, the fear of never-ending pain is worse than the pain itself. He went on about how you can handle any amount of pain, as long as you know that it's going to end. He ended the story with "So just remember, uphills end. Pain ends."
Maybe to a healthy person, this seems inspiring and comforting. Maybe to a girl who just got stung by a jellyfish, who will fully recover in a couple hours, this is helpful. But to a 20 year old girl who has a chronic illness with no cure and no explanation or prognosis, this is hurtful. This man, knew nothing about me or my condition. I didn't tell him that my condition was chronic or incurable or underfunded for research or barely understood by medical professionals. He knew nothing about that. But he still spoke as if he did.
I took a walk on the beach away from the group and let myself feel what I was feeling. It's been a frustrating week. I've felt the disappointment of making progress and then watching it slip away. I've felt the frustration of watching everyone else my age hike effortlessly through the woods while I paid more attention to my oximeter than the beautiful nature around me. And then, I listened politely to a man who knows nothing about my life tell me, with unwarranted certainty, that my struggles will end.
I know, deep down, that my struggles will eventually become more manageable. I know that I will have better days. But I also know that the only thing that all my doctors agree on is that this isn't going to go away. Dysautonomia is chronic. Whether I am fainting once a day or once every few months, syncope will always be in the back of my mind and every single decision I make for the rest of my life, will be affected by my chronic illness. My uphill will not end, it will just vary in how steep and slippery it is.
This man doesn't know my story and he can't see my inner thoughts so he doesn't know how much effort that hike was for me. He doesn't know that it takes me 20 minutes to get out of bed because I have to do it so slowly and carefully to ensure I don't faint. He doesn't see me take my BP 12 times a day or monitor my heart rate on my watch every time I stand. He doesn't see me cautiously and fearfully take note of every sharp corner and hard surface in a room. He doesn't know how meticulously I measure my water and salt intake. And he doesn't know how different the words "Just remember, uphills end. Pain ends" mean to someone who has an invisible, chronic, incurable illness. So I can't hold that against him, I can't blame him.; but that doesn't mean that I can't feel the pain it causes or that the pain is not valid.
I've been trying to make a conscious effort to not allow myself to be ashamed of my emotions and my responses to my situation. When someone says something small but it upsets me, I know that it is hurtful because it highlights and triggers pain that comes from a bigger and stronger source, but it is still hard to not let myself invalidate my own feelings. I have to remind myself that my emotions are not trivial or unjustified. I have every right to feel the way that I feel.
I know that reaching a point of self-assurance with my own emotions will be a long process. In the last few months I have taken steps in the right direction but I know I'm not there yet. I am comfortable calling some people out on their insensitive jokes and I have gotten better at openly talking about my feelings during this journey, but I'm not where I want to be yet. Maybe in a year I will have the confidence and equanimity to address situations like this. Maybe I will be able to speak with full composure and say, "That was ill-informed and insensitive." Maybe I will be able to act as an agent for change in the way people view and talk about invisible, chronic illness.
That man, who was a very nice guide and hospitable host, walked away from that conversation thinking that what he said was helpful and encouraging. He has no idea that it hit me in the gut like a sucker punch. He has no idea because I didn't tell him. I politely accepted his words and let him move on with his day because I didn't feel like my emotions were valid enough to bother him with. One day, I will tell the offender that he has offended. I will unapologetically legitimize myself and take that conversation as an opportunity to explain a perspective that the offender doesn't have so he has the knowledge to not offend again. One day, I will capture that conversation.
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