I’ll admit it: I’ve been guilty of sugar-coating things to spare the feelings of others. I won’t lie, but I will avoid making others uncomfortable or upset at all costs.
So, you can imagine that my answers to the questions “how are you?” or “how are you feeling?” aren’t always as genuine as they could be. I’ve found myself, at times, downplaying how sick I am, how upset about my illnesses I am, or the particular level of excruciating pain or other debilitating symptoms I am experiencing on any given day.
Why do I do this?
Well, there are many reasons.
Primarily, I don’t want to make people worry. And I don’t want to bum people out.
Secondly, I don’t want people pitying me or feeling bad for me. I already feel like a cross between a 99-year-old cripple and a middle-schooler. (Being sick since age 10 robs you of a sense of normalcy when it comes to how you should think, feel, and act in relation to your contemporaries/peers.)
I don’t really WANT to be treated like a child, and I don’t really WANT to be treated like a fragile old lady, either … though at times, I feel like both.
And then, there’s that sense of pride. I think being different is great. I’ve always been proud to be a bit unique from my peers. I have a little quirk to me, a little eccentricity that I wholly embrace and acknowledge. But, I don’t really want to be treated differently because of my health. I don’t want to be seen as “less than,” or “abnormal.” Maybe I am disabled or in some ways handicapped or sickly or differently-abled. I despise those terms, and yet, though it may not “look” like it… they’re all true. But it hurts my pride to admit that these things are true.
That said … you know what hurts almost worse than that?
It’s when I feel that I have to avoid talking about my health or my feelings about my health for fear of upsetting other people (who may or may not care either way.)
It’s hard caring about others’ feelings, more than they appear to care about yours.
It’s hard realizing that the longer you are sick, the less people care, because it becomes the “new normal.” (A tip: just because it is normal to me doesn’t mean it is easy, or that it doesn’t hurt.)
One day, a few weeks ago, I had a meltdown because I realized that it was a no-win situation. If I complained about how sick I was, I was going to be viewed as negative, whiny, melodramatic, or seeking attention. I was going to be told that it could always be worse. I was going to have people in my life give me that “pick yourself up by your bootstraps and move on … stiff upper lip … don’t let ’em see you sweat” kind of attitude.
Yes, though I have a wonderful support system, there are people in my life who simply DON’T want to hear it. Maybe it makes them sad, maybe it makes them uncomfortable. Maybe they view my health problems as a weakness or a flaw. Maybe they’re worried. Embarrassed. Ashamed. Maybe it makes them feel awkward or helpless. Stressed. I don’t know.
Maybe they think I exaggerate, or, that if I simply TALK about my reality, that I am seeking attention, or being ungrateful for the GOOD things in my life … that I’m automatically depressed or troubled … that I’m being a pessimist or a buzzkill or a Negative Nelly or Debbie Downer or catastrophist or worrywart.
Maybe they think that my “turning lemons into lemonade” by capitalizing upon my illnesses for professional gains is unseemly or exploitative. (I think it’s simply turning burdens into blessings, and using the gifts God gave me to help others in my same situation, despite my being sick. If something positive comes my way because of it, awesome, but if not, then at least I feel I’m contributing to the chronic illness community and to society in general, in spite of illness.)
Maybe, just maybe, my talking about my health scares people — not just because of my fate, but because of their own. If it could happen to me, well, then it could happen to anyone.
Maybe, though, they’re just sick of me being sick, and sick of hearing about it.
You know, I am too.
I’m really sick and tired of being sick and tired.
I’m sick of talking about it, writing about it, feeling it, and thinking about it. But I don’t have the luxury to turn it off. A friend or family member can ignore text messages or skim over Facebook posts that they deem annoying or offensive or whiny.
They can avoid the topic of my health like the plague.
They can keep an air of denial: if we don’t talk about it, then it doesn’t exist … and we can just sweep it under the rug, like nothing is wrong.
I, and millions of others, don’t have that proverbial rug to sweep it under. We have no “delete” button, no “block” option, no “off” or “mute” switches. Our illnesses are our constant companions, and for a lot of us, they are going nowhere. They are little evil trolls that have burrowed their way deep into our bones and into our souls and they don’t seem to want to leave — at least not yet, if ever.
I’m going to get as real as real can get: my health problems have pretty much destroyed my life, or, at least they have destroyed the image of what I thought my life would or “should” look like.
And yet … because I’m a happy, humble, sweet, kind, grateful, faithful, positive, and optimistic person by nature … an ambitious person, a social butterfly, an overachiever, and someone who cares about being active and involved in my life and the world around me, I’m not “supposed” to show a moment of human frailty.
Or at least it feels that way.
I am the strong one and I am meant to be strong, always.
I am not allowed to be negative for a bit, to mourn or mope or dwell on all of the losses that these diseases have stolen from me. I am expected to keep that smile on my face, and to be tough. I am expected to answer politely and succinctly when asked about my health. Or, I should avoid the topic altogether, like it’s a dirty secret. A scarlet letter.
Because, let’s face it: most people don’t want to know the truth.
The truth is ugly.
The truth is that I spend hundreds of dollars on makeup and hair and clothing to make myself resemble something other than a zombie.
The truth is that tens of thousands of dollars have gone towards my healthcare.
The truth is that I’ve had over 20 biopsies in my life when most people will never have one. The truth is that I’ve had 32 vials of blood taken in less than 24 hours. The truth is that I’ve had countless trips to the ER and hospital stays and doctors appointments and needle stabs and blood draws and surgeries and injections and yada yada yada.
The truth is that I’m sick every day, I just mange better some days than others. My good days are most people’s bad days, the days that they call off work or stay home from school.
The truth is that I cried myself to sleep last night because of both physical and emotional pain. The truth is that I could end up in a wheelchair someday. The truth is that I may never have children. The truth is that I fear losing friends and opportunities and even my husband, because of my health. The truth is that many of the dreams I had for myself are dead because of my health. The truth is that I often wonder if I will ever get to live as full or even as long of a life as my friends.
The truth is that I hate my body: the way it looks, but more so, the way it acts.
The truth is that I suffer daily … even if I don’t look or act like it.
And those truths upset people.
It all makes people uncomfortable.
It’s icky. It’s sad.
But I get it: no one wants to talk about the gloomy stuff. I can’t blame them. Why would they? I usually don’t!
And I do know I could have it worse: and I thank God every day that I do not. I pray for those who do. I light candles for them at church and I pray and I send good vibes and I donate money and I volunteer. I do what I can for those who have it worse off than me. But my being aware of the fact that it could be worse for me doesn’t change the fact that it could be better for me, too. Yes, a lot of people have it worse. But a lot of people have it better, as well.
And while this kind of “sad” blog post is a rarity coming from me, it needed to be written. It is brutally honest. People need to see my reality — and it’s not just MY reality. It’s the reality of COUNTLESS others. (Literally, countless, because there is not a comprehensive autoimmune registry just yet. Good things may come in the future … )
People need to know that even though I’m “used to” this all, that it’s still hard. Pain is still pain. Sickness is still sickness. And both of those things are unpleasant and burdensome to live with. People need to know that after 22+ years of being ill, it definitely becomes a new normal, and gets easier to cope, but it doesn’t *physically* get easier. Sometimes, I am even still nervous or scared about surgeries or procedures. Sometimes, I want a hug instead of judgement. Sometimes, I just want someone to listen or offer kind words instead of comparing my situation or my life to someone else’s. Sometimes I just want compassion and empathy and sometimes I just want help opening a jar. Sometimes I want to punch something.
I don’t want to feel embarrassed when I stand up like an elderly person beyond my years. I don’t want to feel “unsexy” and “frumpy” when my husband comes home to me in pajamas and 3 heating pads. I don’t want everyone to worry if I look a little flushed or a little pale.
But I do want people to care and show they care, without making a big “THING” of it.
I long for understanding, but most of all I just long for people to quit with this paradox, and the the paradox is this:
Many people only view me as the “sick girl,” but they aren’t interested in discussing my illnesses. At the same time, these people don’t show much interest in my life or achievements outside of my illnesses, either, or seem to want to get to know me for more than being the sick girl. So…what’s left?
I want people to know and see and love ALL of me. Flaws, and all.
I’m this, but I’m also that.
I’m not one thing.
I’m many things.
And sometimes — like lately — my sick self seems to want to try to take over. So please allow me to feel my emotions without feeling like I have to mask them for your comfort when I am the one who is really going through a difficult time physically and otherwise.
Please give me space to be sad if I need to be, without making me feel guilty about it, and know that a couple days or weeks of feeling down or blue because of illness does not mean that I’m depressed, or that my personality has changed, or that I’m a drama queen.
It doesn’t mean that there’s anything to worry about, or any reason to suddenly distance yourself from me or treat me any differently …
It means I’m human.
We all are.
No one is positive or happy ALL the time, and those who act like they are typically aren’t being fully honest, genuine, or transparent.
We all feel happiness, sadness, hope, fear, despair, anxiety, and gratitude, plus a whole plethora of other feelings. When living with health issues, sometimes these feelingss are magnified. Some of us, like myself, like to talk about them. Some people don’t. And sometimes even those of us who are usually the “talkers” and “discussers” and “doers” just don’t wanna.
That’s okay, too.
So I just ask that healthy folks take a more selfless, open-minded, and empathetic approach in their relationships, friendships, conversations, or interactions with those who are chronically ill or disabled.
We don’t want to have special treatment per se, but we also do not want our health problems to be that annoying elephant in the room. Let’s communicate. It doesn’t have to be awkward or sad or fake. It is what it is and it’s going to be that way forever, most likely. So let’s communicate about it when the need arises.
After all, communication is the only way that relationships and understanding can truly grow. And I want to cultivate that communication, understanding and empathy.
I wish to grow together, wholly and fully, from the gnarly root to thorny stem to wilting leaves to blooming flower, instead of only showing the beautiful blossoming parts of myself to the world.
Respect and closeness will flourish when you allow others to live and to speak their truth.
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