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When People Treat Me Differently After Finding Out I Have a Chronic Illness

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All our lives, we are labeled. From the obvious labels of mom, daughter, sister, father, husband, aunt, wife, male, female, to the not so obvious labels based on a person’s perception of you like lazy, attention seeker, snob, nerd, brown-noser, athlete, workaholic, the list goes on and on. Somehow, someway, we sometimes end up letting these labels either define us, or we base our self-worth on them. It shouldn’t be that way.

I’ve been thinking about labels a lot lately. Recently, I’ve been labeled “chronically ill” and now people treat me differently. Although I know most of them mean well, it’s been a hurtful and isolating experience for me to have this label added to my life and to see how it has affected a lot of the relationships with the people in my life. It seems to drown out all the other labels I possess that have a more positive connotation like wife, mom, teacher, sister, daughter, friend, and Jesus lover.

I’m an open book and always have been. It’s who I am. It’s how I believe God made me and how life has shaped me. “To thine own self be true” has always been my MO (mode of operation), and with my strong stubborn nature, there’s this “I’m not changing who I am for anyone” that comes into play.

After nine years of being sick and finally getting an answer, I made a personal decision to stick to who I am and I chose to announce to the world via social media my newest label, having the diagnosis of a chronic, invisible, illness called lupus. Ever since I made that announcement, everything has changed; at least, that is my perception. People no longer look at me the same way. To be fair, not all people, but a lot of people. They look at me with pity, which makes me stomach churn. They look at me like it’s all in my head or I’m just wanting attention. I’m not the kind of person that wants people to feel sorry for me. I never have been.

People no longer greet me the same way. Instead of, “Hey, what have you been up to?” now the greeting is always “How are you feeling?” and then comes the look of “I feel so sorry for you” that always follows. My least favorite is this one, “Are you feeling better now?” I have a chronic, lifelong illness that is incurable. No, I am not feeling better. It could be that I’m having a decent day, or a better than usual day, but it never leaves my mind that at any given moment my body may decide to betray me and take me down with any one of a laundry list of symptoms and ailments that I can’t even keep up with such as fatigue, pain, brain fog, dizzy spells, memory issues and migraines; the list goes on and on.

By no choice of my own, my life as I knew it changed and it will never be the same. I will spend my days trying to keep being me and doing the things I love, but hearing from a highly regarded expert in his field that you have lupus, which is a life-long, incurable disease that you will battle for the rest of your life, is not something you can just put out of your mind. My quality of life will never be what it was before I got sick. Period.

My favorite greeting (heavy on the sarcasm) is, “How are you feeling because you look great?!” This one is the one that makes me feel the absolute worst. As if I want to be sick. As if I’m faking it. As if I’m seeking attention. I do realize that ignorance is bliss and these well-intentioned people simply don’t have any understanding of what an invisible illness is or how it affects a person’s life. I can only imagine how wonderful it must be to not have to understand or experience what chronic, invisible, illness does to a human being, but it doesn’t give a person the right to make someone who is indeed very ill feel like they are absolutely crazy. Who would want to give up the perfectly healthy life they previously had that allowed them to do whatever they wanted at the drop of a hat without having to give it a single thought? Nobody! At least, not any chronically ill person I’ve ever met.

Sound pretty bitter, don’t I? I’m working on that. I start counseling this week. It’s been one year since my diagnosis and I’ve been going through the stages of grief, grief over the life I once had that I have no more. I want to accept my new life and learn how to flourish with these limitations. I want to keep being a positive influence on my students and find the energy to keep teaching. I want to find joy again and laugh with my son and my husband about anything and everything. I want to educate people on what it is like to have an incurable disease so that they can have an understanding of what that means and be able to offer compassion and support in an appropriate way. I want to advocate for more research, better treatment options, and more awareness of how many people are out there that are truly suffering but don’t feel they have the voice to tell anyone.

Yes, I’ve changed in a lot of ways, but I’m still the same person I was before. Please treat me the same. I don’t want this label. I didn’t seek it out or ask for it and I certainly don’t want it to be a hindrance to my relationships. I’m an extravert and I need people! Don’t worry; you can’t catch what I have. Please keep being my friend and treating me the way you did before I got my diagnosis. You can still ask me to go do things or to hang out. You can still talk to me about your problems; we all have them, and I want to be here for you, too. You can still count on me to be sarcastic and snarky, loud and obnoxious, dramatic and weird. And you can also look at me for the person that I am; a strong, powerful, warrior that will never be defined by a label. And may I suggest you don’t let yourself be defined by labels either?

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Originally published: April 19, 2017
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