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Please Don't Tell Me How to Feel About My Chronic Illness

“Think positive!” ”Be a positive person!” “Look on the bright side, someone else has it worse!” “At least you don’t have (some other illness)!” “It’s not that bad!” If you’re a person with a chronic condition, you’ve invariably heard at least one of these comments, or some variation thereof. They’ve probably been repeated to you way more than once. Well-meaning people may have gifted you with pamphlets or books about positive thinking or shared memes with inspiration porn.

The question: is it helpful? For me, not so much. Ironically, there have been numerous times I’ve felt absolutely fine until I’ve been told to think positive. When people try to tell me how I should be feeling or thinking it leaves me frustrated and disappointed.

“Think positive!” has been thrown at me when I’ve tried to gently clarify that yes, I really am unable, for whatever reason, to go out or take part in some activities. I can think positive until the cows come home, but it won’t change facts. It’s cropped up when I’ve explained that some of my illnesses have the potential to progress to more serious conditions, give me unpleasant complications, and/or shorten my lifespan. Discussing possible outcomes is not expecting or asking for them, and being educated and informed on one’s illnesses and medications shouldn’t be considered morbid or negative. No, not every illness has a cure. Not every illness goes away. Some of them tag along with you for your entire journey on this planet. Some have documented complications, and one needs to be vigilant about monitoring for them. Facts, not fear. In this context, “think positive!” seems to be employed as an all-purpose incantation to bury anything that seems unpleasant, worrisome or out of step with the listener’s expectations.

It sometimes seems that unless you walk around with a perpetual smile like the Joker, never complain, shrug off all the logistical and financial challenges of being sick and declare to the world that by golly, you are positive!, you’re relegated to some mythical Team Negative, and that’s that. You’re told that you are fatalistic. Pessimistic. Looking at the glass half-empty. Not trying to look for hope. Not trying at all. Giving up. So on and so forth, ad nauseam. Being considered negative makes you a persona non grata – there are even memes on social media encouraging everyone to excise “negative people” from their lives or only associate with those who are unfailingly positive.

When, and why, did we start categorizing everyone with such broad, sweeping judgments about their emotions? What about those of us who take great joy in our good days and successes, cry and get angry when we need to do so, and try to accept all our emotions as part of the human condition? What if the glass is half-full or half-empty depending on your situation? That sort of objectivity doesn’t seem to have a place anywhere. You’re either Cheer Bear or Grumpy Bear, a Jedi or a Sith, and there’s no space for any middle ground.

If you ask someone about the “think positive” comments they make, they’ll likely say that they they’re only trying to offer encouragement and support. They might even be extremely hurt or confused as to why their suggestions of positive thinking elicit frustration or irritation. After all, they want their loved one to recover – or at least feel better – and they’re panning for nuggets of hope where they can be found. They also may be trying to soothe themselves by making the argument that things really aren’t as serious as their loved one claims, or that it’s a matter of perspective.

What happens when we’re constantly told to think positive? I think it has a chilling effect. We retreat into our shells and fabricate fiction for our loved ones. We smile and tell them we’re fine when we’re not; we don’t fill them in on what’s truly going on with us; and we certainly don’t let them know when we’re frightened or angry. We don’t trust them to be there for us in the ways we need. They’ve told us what they want to hear and we don’t want any more lectures, so we outwardly toe the line.

Our fake smiles might make other people feel better, but that’s about all they do. They won’t stop our illnesses from hurting us. My lymphocytes don’t particularly care how happy I am; they have their own agenda. As disability activist Stella Young once said, “No amount of smiling at a flight of stairs has ever made it turn into a ramp.”

That, friends, is the crux of it. You can tell us to think positive, but you should know that it’s not going to give us the support or empathy that might actually help us. We don’t need to be told how to think or feel on top of everything else. It’s up to you to decide how you want to interact with us, but whatever you choose will have lasting effects.

“I believe you. I accept what you’re saying. I might need more time to process this, but I hear you. I’m trying to understand your illness and how it’s affecting you. I love you. I’m here for you.” These are the words we need from our loved ones. Not “think positive.”

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Thinkstock photo by Yee kwan Lai