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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?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • crystal.harper moderator
    4 months ago

    I’m going to offer a third option. I look at all health advocates as incredibly brave people. It takes a lot of courage to be so open about such a sensitive topic and to not only provide truth as to what it’s truly like to live with a chronic illness, but also hope and encouragement through the small victories we have. Personally, I know that looking up to others who are going through similar things as I am always provides so much comfort to me. I do understand what you mean about others who may be reading your stories and can’t relate though and to that I would say that they can continue to scroll if they don’t want to read. The positive impact that you’re having on people, in my opinion, far outweighs any negativity or backlash you may receive from others who have no idea what it’s like. I hope you also find a bit of comfort in sharing your story because like you said, if you don’t it really does feel isolating and “suffering in silence.” I hope you keep doing what you’re doing and I’ll be here rooting you on! Best, Crystal

  • thedancingcrohnie moderator
    4 months ago

    To answer your question: I feel like honesty is the best policy.

    I find myself leaving out a lot of details whenever I am asked about my situation and how I’m feeling. I sort of give a broad sweeping statement.

    But perhaps to the ones who actually ask and care, its best to really be honest and let them know all you’re going through. Give details. Be honest. Be candid.

    Always dancing,
    Elizabeth (team member)

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