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Why I Don't Agree With the Person Who Called Me a 'Victim' of My Illness

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When I first received my diagnosis, I fell into the cycle we all know so well as grief. There was of course a bit of relief at finding answers, but the hope got chipped away at as I slowly came to terms with the realities of my situation. Because when you’re told you have a chronic illness, you are also quietly hearing that some part of the rest of your life will always be affected by it. And from the starting line, the rest of your life with chronic illness is a giant pill to try to swallow when you’re probably already trying to swallow enough of them to retain some quality of the life you once knew.

At the beginning, people were gracious with my emotions. I was so angry at the universe for dealing me a card that couldn’t be given back, that couldn’t be ripped into pieces and made to disappear. I lashed out in unexpected moments and then crumpled into tears, and I was loved through it. Through all the confusion, the depressive episodes, the days spent in bed, I was held and soothed and given pep talks about brighter tomorrows.

I believe in brighter days, but I struggled with the idea of the rest of my life. I had a plan for where I was going and how I was doing things, and the aftermath of my diagnosis required me to accept that much of that plan was going to be trashed. It devastated me. That was never to say I didn’t believe in the wonder of new plans, but I desperately needed time to grieve the life that might’ve been.

In the height of that grief, someone I loved desperately called me a victim.

Truthfully, I think victim is one of the worst words to use for a person. We use it to describe someone who has been wronged, who’s faced a trauma, a person who has come out the other side of something that shouldn’t happen to a human being. It makes me think of weakness, and I don’t think that connotation should be connected to people who endure awful things. They should be called warriors, victors, champions. They should be celebrated, not pitied. I had never before associated myself with weakness. Which is astonishing, actually, when I look back on some of the challenges I’ve faced, but I never thought of myself as someone who was going to be destroyed, even when it felt like circumstances were trying to erase me. I still saw myself standing on some proverbial bridge, sword in hand, ready to conquer what lay ahead. Even on the days when the sword was a little too heavy to lift, I was still readying myself for battle.

But someone else looked at me and my grief over a life I’d never live and instead saw someone who was giving up. For her, a moment too long at a standstill was a way of giving my diagnosis a chance to defeat me. I understand her intentions, I understand that she wanted to push me to fight back against my illness; she wanted me to defy her by standing on my own two feet and proving the word “victim” wrong. I wish she had chosen another method to egg me on, I wish she had been able to understand what the world looked like from where I was sitting. I wish we could do the whole situation over and over again until we got it right, until we didn’t have to lose each other over it… but I understand now that she was trying to love me through it.

There may be people in your life who never understand your grief or your chronic illness. They may never be able to grasp the realities of your situation because they just don’t have the tools to do so. They are the people who try to give you solution after solution to your ailments. They are the people who are surprised that you are still sick weeks and months and years after your diagnosis. I believe they are not trying to hurt you with their words — though it may feel that way — they just don’t have the experiences to understand what you are living through. For the average person, chronic illness is nothing more than that list in the doctor’s office. They are illnesses that are discussed over the dinner table with doctor-suggested solutions and what Aunt so-and-so tried that worked. For some people, a chronic illness looks like a minor blip in the beep beep of their everyday life.

These are the people who might try to “fix” you.

I want you to know what I desperately wish someone had told me back then: while there may be something wrong with your body, there is nothing wrong with you. Grief can swallow you up for a long time — I don’t think it’s unhealthy if it does — but you are not a victim to your illness. You are not a victim to your thoughts. You are not a “victim” for needing time to process what has changed. I promise, even when it feels like you are drowning in it, the brighter days are waiting for you. And they will be there for you whenever you are ready for them.

Though I know it was said with good intentions, being called a victim hurt me a lot. I began questioning my interactions with everyone and I became very fearful of sharing my feelings with others. I worried that every person who heard my story or heard my thoughts or simply heard my voice was seeing someone who wasn’t strong enough to get through it. Separating my own anxieties from my interactions with others was another hurdle to jump through, but it was necessary to remind me that what I thought of myself wasn’t what other people were thinking at all. It’s not our place to decide how others see us; we are only responsible for how we see ourselves.

I encourage you to give yourself a word of power. Be a champion or a warrior or an ass-kicker. You don’t have to claim your illness as your new identity, especially if it doesn’t make you feel capable. A diagnosis is just a way for doctors to understand you better — it says nothing of who you are as a person or what great feats you will accomplish. You are more than an abbreviation, more than a scientist’s last name, more than a page in a medical journal. You are you and you are exceptional in your existence. I am not a victim for grieving and neither are you. Whatever you feel about your diagnosis is valid regardless of what anyone else thinks. We are superheroes for getting out of bed some days. We are unbeatable for choosing the options that are best for ourselves and our health. We are strong for living with an illness that is scary and difficult and sometimes impossible. We are champions for getting ourselves through it each day.

And to the person in my life who didn’t understand… I hope you never find yourself at a standstill and think that makes you weak. I hope you learn to celebrate even the smallest of victories. I hope you never beat yourself up for your feelings. I really, truly, hope you have a long and happy life.

But most of all, I hope you know that I don’t see a victim when I look in the mirror.

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Lead photo by Thinkstock Images

Originally published: February 8, 2017
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