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Chronic Snarkopolist: Wearing a Mask
Hello my loves!
As I have gotten back into my life I have found myself doing several things. I have found myself feeling vulnerable around my sicker friends – afraid to admit that I am DOING some activities again. And I have been shy around my very healthy active friends because I don’t want them to judge me for not being able to keep up to snuff with their life style either. I often feel like I’m messing up everyone’s world because I’m faking healthy and sometimes I’m not sick enough to be sick (or I don’t COMPLAIN LOUDLY ENOUGH or I’m not ANGRY ENOUGH or I don’t LOOK sick enough to be sick… I just don’t DO sick well enough?)
Ultimately I look at myself and say, “Seriously? What are you DOING Melissa? Haven’t you just spent a year teaching yourself love and acceptance and being where you are RIGHT NOW?” But sometimes I think it is easier to talk about how great it is in theory. When we are actually LIVING the process it is far more vulnerable.
Hearing the words, “I think you are healing” feels like a jinx, a gift, and an exciting opportunity all wrapped into one. I’m overjoyed. And I am also waiting for the shoe- no- NO THE GIANT PIANO- to drop on my head.
I am always stuck between Dare I? And how dare I! I loop between survivors guilt and LIVER’S joy. And also- because I still have my days, some days I sleep in and feel like crap and hide and think, “Well, I guess I got too big for my britches.”
I am finding places for my clothing. Wait- I lost some weight that came with treatment and illness. But guess what- I also know that doctors are forever injecting me. So I know that some weight gain in the future is inevitable. I am not sure how many sizes to keep. I am not sure how much weight gain or loss is here to stay. I am not sure how many clothing sizes to give away.
And so I tell my friends, “I would like you to baby sit my clothing. Enjoy them. I would like visitation rights should the need occur.” That way I don’t just have unused clothes right now. But I am also acknowledging practicalities of chronic illness and treatment. It is about strategic planning.
One woman with lupus who regularly takes steroids once joked about having travelling pants for all of the women in our circle who have similar issues. It was funny at the time and it resonates even more now.
I am afraid to admit when I am having a good day and similarly I am afraid to admit when I am having too much of an excessively bad day anymore. I feel pressured to “behave normally” now that life is starting to BE more normal-esque. Yet, I can’t tell what is normal and what is just typical and what is routine and what I’ve gotten used to.
Is it the kiss of death to say I want to be “normal?” Yes. I feel afraid to jinx myself. And yet- THIS is how I am living. I am tip toeing around my friends, my relationships with people, my activities. If we are wearing masks are we really living? I have waited for THIS MOMENT because it is the one I haven’t had for so long.
Do you do it too? Do you pretend health or insurance issues away so you don’t have to think about it some days? Do you avoid discussing it or ignore it so you can just have a LIFE sometimes? Do you ever have guilt about your good days? Do you ever just let your healthy friends think you are just more slow rather than tell them WHY you got this way? Do you ever just pretend you are “whole and sound of body?” Do you ever listen to your “healthy normal-esque” friends tell you about their “normal people” surgeries or their stubbed toe and comfort them and NOT tell them about your one hour rituals to get up and medicated in the morning just so you can imagine what it is like to BE THEM? DO YOU? Do you worry that you will anger your sicker friends if you get healthier. Do you ever feel you are disappointing your healthier friends if you stay sicker? Do you ever feel like you are failing everyone by doing it all IMPERFECTLY? Do you wear a mask? Please tell me. I must know!
I will see you same time next week! Kiss kiss!
-Melissa
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2 Responses to “Chronic Snarkopolist: Wearing a Mask”
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Having been diagnosed with Graves at age 15, this article pretty much defines my high school/college experience. When I was really sick, I was always torn between letting myself “feel” sick and trying to brush it off for the sake of appearances. But then a “well-meaning” friend would say “You don’t SEEM that sick”, and bam, I would feel like I was supposed to be whining about it all the time or something. Even now, going weeks not showing any sign of illness makes the ever-looming off-days all the more guilt ridden. I hate feeling guilty for feeling healthy. And I hate having to use the Graves as an excuse sometimes.
Ugh, what are we doing wearing these masks? Even around those we love and trust most.
Why do we wear masks I ask myself, is it because we don’t want to show a vulnerability to others, we were always the strong ones the ones that helped others and now we need help from time to time… like me I hate to ask for it. Even though my allergies have got increasingly worse and I suffer daily just doing simple things like washing up is a task..thank god for the dishwasher at times. I’m having to change my life to suite my illness we all do.
Melissa embrace the good days and enjoy them and hope that they continue, save those clothes and if there comes a time you think you won’t ever need them then instead of discarding them give them to someone who will appreciate them just like we all appreciate you.
I heart you even though I don’t say it enough take the good days and roll with them when you get a bad day take that time for you.
I never thought things would improve or change with graves disease they did in different ways. I am trying to live around it rather than it rule my life anymore, even any new conditions that pop up will have to fit into my life and not me fit into it’s I refuse to be beat by it. stay strong I know you are.
Lollyxoxox