It's Not Ok
Typical conversation:
(Somehow my health comes into question)
Person: If you don’t mind me asking what’s wrong with you?
Me: Oh I have a syndrome that cause the automatic functions of my body to forget to happen like breathing, pulse, blood pressure etc…
Person: Oh my gosh, that’s horrible!
Me: Yeah, but I’m still alive and fighting!
Person: That’s good because it’s all going to be ok!
………
Ok??? Really? It’s going to be ok? Well duh! Why don’t you tell me the sky will be blue tomorrow! Of course it’s going to be ok. It will either get better and I’m back to normal life or worse and I’ll die and then be in better place. Do you tell a woman in labor that “Everything will be ok.” or someone who just lost a limb, “It will be ok,” I know it will be ok but right now it’s not!
I’m not trying to be rude but when you say everything will be fine it makes my symptoms seem smaller. You make it sound like no big deal. I know/hope this isn’t your intention and that it is just a coping mechanism. I know it’s hard for you to comprehend but it is for me too. We are all just humans. Some things boggle our minds and we don’t know what to say. I know when traumatic things occur to our loved ones or friends we don’t always know what to say so we try and come up with something that is comforting. This doesn’t always work. So we end up saying something we think is comforting but in the end isn’t.
A chronicly ill patient is almost always dismissed especially those with invisible illnesses. They are constantly pushed to the side and have their pain (both emotional and physical) be made into “nothing.” As I have just become a chronicly ill patient I have noticed this more and more with each passing day. People don’t want to acknowledge what is wrong with my body. They say everything will be ok.
I know things will be ok. I need someone for the here and now. If you don’t know what to say then say, “That stinks,” and give me a hug. I know this doesn’t sound like much but it’s actually huge! It would mean the world to me if people would not have pity but just love and a hug. Definitely not an apologizing. Don’t say sorry. You didn’t give me Dysautonomia, so don’t apologize. Just give me a hug because I don’t feel ok.
My life has changed but I have my hope in God that He has a plan. My life is crazy and it hurts at times but I will be ok. My journey has just started. I’m still learning how to cope and live a normal life as much as it possible. What I need is for someone to be there when I fall not to tell me I’m ok but, to help me up and hold my hand as I walk.
(Somehow my health comes into question)
Person: If you don’t mind me asking what’s wrong with you?
Me: Oh I have a syndrome that cause the automatic functions of my body to forget to happen like breathing, pulse, blood pressure etc…
Person: Oh my gosh, that’s horrible!
Me: Yeah, but I’m still alive and fighting!
Person: That’s good because it’s all going to be ok!
………
Ok??? Really? It’s going to be ok? Well duh! Why don’t you tell me the sky will be blue tomorrow! Of course it’s going to be ok. It will either get better and I’m back to normal life or worse and I’ll die and then be in better place. Do you tell a woman in labor that “Everything will be ok.” or someone who just lost a limb, “It will be ok,” I know it will be ok but right now it’s not!
I’m not trying to be rude but when you say everything will be fine it makes my symptoms seem smaller. You make it sound like no big deal. I know/hope this isn’t your intention and that it is just a coping mechanism. I know it’s hard for you to comprehend but it is for me too. We are all just humans. Some things boggle our minds and we don’t know what to say. I know when traumatic things occur to our loved ones or friends we don’t always know what to say so we try and come up with something that is comforting. This doesn’t always work. So we end up saying something we think is comforting but in the end isn’t.
A chronicly ill patient is almost always dismissed especially those with invisible illnesses. They are constantly pushed to the side and have their pain (both emotional and physical) be made into “nothing.” As I have just become a chronicly ill patient I have noticed this more and more with each passing day. People don’t want to acknowledge what is wrong with my body. They say everything will be ok.
I know things will be ok. I need someone for the here and now. If you don’t know what to say then say, “That stinks,” and give me a hug. I know this doesn’t sound like much but it’s actually huge! It would mean the world to me if people would not have pity but just love and a hug. Definitely not an apologizing. Don’t say sorry. You didn’t give me Dysautonomia, so don’t apologize. Just give me a hug because I don’t feel ok.
My life has changed but I have my hope in God that He has a plan. My life is crazy and it hurts at times but I will be ok. My journey has just started. I’m still learning how to cope and live a normal life as much as it possible. What I need is for someone to be there when I fall not to tell me I’m ok but, to help me up and hold my hand as I walk.
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