Let's Chat About a Very Taboo Aspect of Chronic Illness

Let’s have an honest conversation about one of the toughest struggles most, if not all, chronically ill people have.

Without conversation, we cannot understand others and their challenges. Having love and empathy for another individual, essentially comes from listening and understanding. Us humans can sometimes be quite bad at listening (myself included).

I loathe self pity and I’m not a fan of blaming the healthy for issues we have. Thank goodness we’re not all sick. If you say something like, “Are you healed yet?” I don’t blame you, I’m happy for you because you’re obviously healthy and health is possibly one of the biggest blessings on earth. So this is no such post. There is no blame here. Just a safe space for facilitating conversation.

Unfortunately, many conversations are too tough to have and when we don’t converse, it breeds isolation for both parties.

So, let’s chat about a very taboo aspect of illness.

Let’s chat about what is seen by many as “the flakiness in social settings” of the chronically ill.

I can understand how it must be incredibly perplexing to the innocent (and otherwise healthy) friend, spouse, acquaintance, and family member, to doubt the validity of reasoning when a chronically ill person excuses themselves from an event five minutes before it starts.

Especially because very often, you chatted to that chronically ill person just this morning and they said they were definitely going to join, and that they were excited about said event.

Maybe they were even going to come early to help you set up. Maybe, you saw them last night at a party or you caught them on a mammoth shopping spree just the day before.

How on earth is it possible that they now suddenly feel like they might need to go to hospital? This must mean they pushed themselves too hard. They should’ve rested when they had a chance yesterday.

Even more perplexing, how is it possible that they slept for what seemed like 14 hours and now they can’t even go out for a planned coffee with family? Something seems off.

Even more offensive is that they’ve been avoiding you because you’ve had a slight cough, but now they are out shopping which is obviously far more risky in terms of potentially catching a bug.

It cannot be possible. Therefore the chronically ill person must be hiding the real excuse. Perhaps they just don’t want to come and they are using the excuse of being sick again. Perhaps you get that their circumstances change quickly, but you wish they would at least just try to push themselves a little bit for your sake.

The thing about not having an immune system (and many other illnesses) is that it is an invisible illness. To the naked eye, you could never tell that they are on the verge of landing in the ER, or in a wheelchair. Even to a very trained eye (doctors, nurses, others with illnesses), it can be very tough to spot when a person is really very sick.

We don’t want to let our sickness define us so we push ourselves so hard to achieve what seems like “a normal day.” But my normal day and the normal day of the relatively healthy person will never ever look even remotely similar.

This is no one’s fault. No one is to blame. Not me, to you. No one really needs to understand everything about the other person’s typical day. It’s OK for us to not “get it.” You have your struggles, I have mine.

I would just like to get to a place where we can say something like, “I am sad that you’re not joining and I don’t really understand. But, I know your battles are different than mine, so rest up. I’ll keep some cake for you in case tomorrow is a better day.”

Instead I feel like I need to explain myself in case you, heaven forbid, think I’m tricking you. I feel guilty and sad and I want to make you understand that I’m being very sincere. But I can’t make you understand.

All I ask is that, just like you don’t explain all your actions to everyone, you don’t expect me to do it. You know me. Just trust me. I’m being honest. It is possible for things to change so quickly for someone who is chronically ill. I promise you, I’m doing my very best to make today pleasant for everyone. I’m trying too hard to make memories with you. Just be happy when you see me dancing in church without a care in the world because this afternoon might be very different.

Let’s just love each other, even if we don’t really understand each other. Let’s just believe each other. Let’s just help each other get through this thing called life. Let’s look for ways to love and not to judge.

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Thinkstock Image By: KatarzynaBialasiewicz