Will Those With Chronic Illness Ever Be Understood?

Will those of us with chronic illness ever be understood?

When you are in chronic pain, you are dealt one of two hands - neither are optimal.

The two options when dealing with chronic illness

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You can tell others about it, being seen as a "complainer" & really, who understands? Many times, people are so uncomfortable that many of them only find solace in comparing only issues to you they can relate to "oh, I have IBS" or "my mom had post-op colitis for weeks after antibiotics - I know what you mean"... STOP! Just STOP.

You don't know what I mean, you never will & to be honest, as much as I want you to understand what I’m dealing with, I don't WANT you to understand! Chronic pain is something I don’t understand & can barely physically handle myself. Having other people see my weakness by verbally telling them I'm struggling is not the way I cope. I have tried my best to be as transparent as possible, but for some, it’s too much. For others, they just don’t care to listen, to be frank.

Suffer in silence

You can ignore the pain & suffer in silence. You live your life in a glasshouse hoping no one knocks at your door, because the best way you deal with things like this - denial.

So much fear, avoidance & skepticism that "even if I do tell someone, what will their reaction likely be?" Will they flee? Will they spread rumors? Will they stay? And if they actually do, for how long?

I'm constantly reminded by the flooding of my inbox of others pouring out their hearts about friends, family, coworkers who do not understand their chronic pain.

You cannot see the air, yet you know it is there. You can't see love, yet you feel it in the depths of your soul & you can't see illness, but you can physically, emotionally/spiritually & psychologically. You hear all the time "we just want others to say I understand" - while I appreciate the sentiment, I need MORE for my friends.

I demand their pain be felt, understood & heard.

How much are others able to handle about our chronic pain?

I feel like either way, we are constantly fighting a battle trying to fit in the balance of everyday life, in addition of our full-time jobs as patients, moms, dads, sisters, brothers, aunts, caregivers. So what is a “good amount” is honesty? What is the amount of information that others can handle without breaking eye contact, while truly listening to my answer when they ask how I am?

As a patient in chronic pain with diseases that are at the moment, incurable, I fight day after day for one of these, in addition to just trying to keep my life together.

1) Be seen as a complainer - a whiny, weak human.

2) Suffer in silence, live life with lots of secrets, cry a lot, go through denial. "What form of awareness is this?" "What kind of advocate are you?"

I live my disease mostly out in the open, as a health advocate. I see the phrase a "strong woman like me" way too often. But it comes at a cost. We are sometimes expected not to show weakness; we're expected to persevere & are expected to come out on top. It is exhausting to be someone’s role model and hero. You are constantly held to a higher degree by those people and are reminded that you have let people down when you lose some of your battles. Screw the resiliency and brave factor of living with chronic disease. It’s so hard to tell people you need their help now more than ever because sometimes illness is stronger. That doesn’t make you weak, that makes you honest.

In terms of chronic pain, I sometimes feel as though we will never be understood. I can't even seem to understand it myself, though here I am, day after day, trying to break down stigma.

How can I/we better communicate our symptoms and needs to those who ask?