When people ask me what I am or what I am doing, generally my typical answer is the same, “I am OK,” or “I am good,” or “I am OK,” or, “We are all OK.” Without a second thought, we have conditioned this response. These reactions are so automatic that we don’t know any other answer. It’s just because I sometimes think “Hello, how are you going?”When you see the people, it’s so automated that our answer is the same, it’s automatic.
We don’t want to share how “actually” we are for many different reasons. Our family or friends wear no burden because I’m sorry to tell how we feel, the pain, fatigue, mental anxiety. We know we can’t stop talking once we start talking.
Or, even those we love do not want to hear it from previous discussions, do not feel confident of our suffering, or are simply guilty of our suffering. This is a condition that people have difficulty believing, so it’s everything in our heads. And when our healthcare community makes it even more difficult to take thoughts and feelings. And maybe some of us deny that we have a very misunderstood condition. For some reason what we’re doing is pretending to be “ok.” But it’s exhausting somewhere.
I tried to learn how to continue as’ normal’ a life as I can since I was diagnosed with fibromyalgia, chronic pain, chronic fatigue, and several other conditions. The tears that come when my body and brain tell me to slow down or end are hidden. I don’t show the physical or mental pain I have, and I try to participate in the activities. I keep pushing myself to prevent people from seeing me suffer. It is important for my family to be there because I participate. But it’s becoming more and more difficult to participate every day, week, month and I have to watch life happen. But I’m still trying to pretend it’s all right.
Whether it’s physically all right or mentally all right, it’s exhausting. Our fighting, we don’t want to show anybody. We don’t want to take pity on the people, or have you tried to listen to “cures” proposals that are endless? “If they know our condition, we don’t want to hear the negative voice of people. And in the case of our loved ones, we don’t want to burden and put our sufferings on their shoulders regardless of our support and our understanding of our struggles.
The chronic, invisible disease is an unfair hand we have to learn to live with. We have to struggle to find treatments to reduce our symptoms every day. But yet we keep hiding our struggle and keep fighting to pretend we’re all right. And for many of us, it makes us vulnerable to show our pain and struggles, and I do not like to feel vulnerable, let alone see it for anybody else.
“I’m okay,” because the key phrase my family has learned to mean now is “I’m not okay.” I must be more responsive in my house. I keep on smiling, hugging them, letting them love me. I’ve got to the point I’m not trying to hide my misery from them because they’ve learned to see me past trying to be all right.
Fortunately, I have a family that knows how I feel and supports me every day, as much as anyone can. However, my mask appears and my smile is painted on when I leave the walls of my secure room. At some point the goddamn will break, it will have a mental impact, we are swallowed up by exhaustion, and we have to grieve. We must take some time to “not be OK” for a little, and in some ways, it is a relief to allow ourselves to be OK and rid ourselves of pain.
So, while pretending to be all right can drain us, for whatever reason we’re going to continue to do that. However, I would encourage you to leave and be vulnerable once in a while. Practicing yourself as much as you can, have a good cry, indulge in something that makes you feel better. Take care of yourself, most of all. Keep on fighting for a better life, continue exploring therapies and treatments that can alleviate your sufferings. You mustn’t always pretend to be all right, because it’s frankly exhaustive.
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I have fibromyalga and I have noticed a sharp pain in my urethra or somewhere down there, doctors can’t figure it out. I was wondering if anyone else with fibromyalga has experienced something like that