The Advice I Get About My Illness That Isn't as Helpful as People Think
One of my favorite mottoes ironically was said by a cartoon penguin: “Just smile and wave,” the penguin said in “Madagascar.”
As simple as it seems, sometimes this is the only motto I resolve to when someone decides to bombard me with advice or ideas that are totally emotionally draining for me but for them, they think they are being positive and helpful.
Battling a chronic illness means you face many bad days, days when your eyes show no sign of hope, no sign of willingness to fight or survive. But you still do, you still fight, you still think of whatever positive idea you have to help push you forward, even if that was something as simple as seeing the smile on your kids’ faces when you get out of bed.
Those are the days when I try to avoid people, although one might think that on those days, I need them more. I avoid them because I have no energy to talk or to give compliments or even be nice. I avoid them not because I’m depressed but because sometimes they don’t help me, and rather make me feel worse.
Recently I had a bad diagnosis, without further details, and it took me some time to start and focus on the plan ahead and try to figure out what can I do. I made a mistake of sharing what my doctors told me with a few of the close people around me, not looking for sympathy or advice or even a pat on the back, but the mere idea of just stating the facts when asked how did it go with the doctor.
One friend started talking to me about preparing everything and everyone around me for the worst, talking to my kids and family about death.
Another told me to start writing letters to my daughter and tell her how I feel about all of this and that I might die and then write about how I would feel during many events in her life.
For few days thereafter, I was emotionally and mentally drained. The whole idea haunted me; physically I felt worse and even my lab results in two days showed worse results. Instead, I decided to write this article and share how much my friends, who thought they were helping, weren’t.
For starters, I’m not in denial, I know what my odds are, I know what might or might not happen, I know, and believe me, doctors remind me every time they see me.
Second, I know that you meant well, maybe wanted to give me a shoulder to cry on and show me that you’re OK with me talking about all this stuff, but even when I do say this, you answer back with “think positive.” How is that helping me?
What I want you to do is to tell me, “Fight!” To tell me not to think about death, but think about life. Please don’t joke when I feel bad to lighten up the mood because I don’t need jokes. When I tell you those dark thoughts, listen, answer with positive words, positive stories.
You see, I know you think you might be giving me false hope and you’re being realistic. I get it.
But I have enough reality in my life, my plate is overflowing with real drama, that I need an escape, like going to the movies to watch a fairy tale.
I try to respond as politely and as humorously as possible, but deep down I’m hurt, because I feel the surreality of everything, in those words you say, those images pop in my head and puts me down.
You are not giving me a cure; you are not giving me false hopes because I know everything, believe me I sit in front of those doctors listening and trying to look like I’m accepting it, while in fact I’m not.
I want to fight as long as I can, as long as I know how. I want to see my kids’ smiles, I want to be there for them, with every cell in me I live by hope.
Please don’t take my hope away from me by trying to be a good friend, by thinking that you’re helping me. Help me fight, help me get up, help me research and see what else I can do, but don’t be the one that breaks me down when I lean on you — for some days, your words are the ones I need to fight the fight.
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