When people ask me how I am, or how I’m doing, my typical response is generally the same, “I’m OK,” or “I’m good,” or, “I’m fine.” We all can understand these responses because we’ve said them a hundred times. We have conditioned this response to fall off our lips without a second thought. These responses have become so automatic that we really know no other response. Sometimes I think it’s just because “Hi, how are you?” is such an automatic question when you see people that our response is the same, it’s automatic.
For many different reasons, we don’t want to share how we “really” are. We don’t want to burden our family or friends with the woe is me tale of how we are feeling, the pain, the fatigue, the mental anguish. We know that once we start talking, we may not stop. Or, we know from previous conversations that even those we love don’t want to hear it, don’t believe our suffering, or just plan blame us for how we are suffering. This is a condition that is difficult for people to believe exists, therefore, it’s all in our heads. And when thoughts and feelings come from our healthcare community, it makes it even harder to take. And maybe some of us are in denial about having a condition that is widely misunderstood. For whatever reason, pretending to be “ok” is what we do. But at some point, it is exhausting.
Since being diagnosed with Fibromyalgia, chronic pain, chronic fatigue, and several other conditions, I have been trying to learn how to continue with as “normal” a life as I can. I try to participate in activities, family get togethers, “LIFE,” I don’t show the physical and mental pain I am having; I hide the tears that come when my body and brain are telling me to slow down or stop. I continue to push myself so that people don’t see me suffering. I participate because it’s important to my family to be there. But, with every passing day, week, month, it is getting harder and harder to participate and I find myself having to watch life happen. But I still try to pretend everything is ok.
Whether it is pretending to be physically ok, or mentally ok, it is exhausting. We don’t want to show anyone our struggles. We don’t want people’s pity, or listen to suggestions of “cures,” the unending, “have to you tried this?” We don’t want to hear the negativity in people’s voices when they know our condition. And in the case of our loved ones, no matter how much the support us and understand our struggles, we don’t want to burden them and put our suffering on their shoulders. Chronic, invisible illness is an unfair hand that we have been dealt and have to learn to live with. We have to fight everyday to find treatments that help minimize our symptoms. But yet we continue to hide our fight and continue our fight to pretend we are fine. And, for many of us, showing our pain and struggles makes us vulnerable, and I for one do not like feeling vulnerable, let alone having anyone else see it.
In my house, I have to find a better response to “I’m fine” because that is the key phrase that now my family has learned to mean, I’m not fine. I still continue to smile, hug them, and let them love me. I have gotten to the point where I don’t try to hide my suffering from them because they have learned to see past me trying to be ok. Thankfully I have a family that understands, as much as anyone can, how I feel and they support me each and every day. However, once I leave the walls of my safe space, my mask appears and I paint on my smile. At some point, the damn will burst, the act of being ok will take its mental toll, the exhaustion swallows us up and we need to grieve. We need to take some time away so we can be “not fine” for a little bit, and it is a relief in some ways to be able to let ourselves be ourselves and get rid of the pain of pretending to be ok.
So, even though pretending to be ok can drain us, we will continue to do so for what ever reason fits. But I would encourage each of you to let go once in a while and be vulnerable. Have a good cry, indulge in something that makes you feel better, practice self-care as much as you can. Most of all, just take care of yourselves. Continue to fight for a better life for yourself, continue to explore treatments and therapies that may ease some of your suffering. You don’t always have to pretend to be ok, because frankly, it’s exhausting.
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