The Hardest Thing About Being Chronically Ill

It’s not the sickness.

It’s not the pain or the fatigue.

It’s not the challenge of solving a problem or trying to figure out how to get well. (For me, that’s actually fun…most of the time.)


Getting really vulnerable here….


Over a month ago, I wrote about my journey to wellness.

I must clarify an impression that you, my reader, may have taken from that initial post, by adding that I still have a long road ahead of me. How long, I don’t know. The struggle could very well be lifelong.

While I have seen improvements in my health over the past few months, the journey is definitely a roller coaster, with constant ups and downs. The progress is slow. And it seems that I am constantly discovering additional causal factors implicated in my sickness, and new diseases that I may have to deal with.

My health has not been – and likely will not be – transformed after a week of following some popular or highly-radical diet (although it could be argued that my current diet is pretty “radical” ūüėõ), though I have seen significant improvements over the course of the year, for certain.


The hardest thing about being chronically ill is the nagging feeling, the merciless, unrelenting whisper in your head that says:

“You are a disappointment.”

It’s seeing the pain that your family and friends feel for you.

It’s looking into their eyes and souls and sensing great fear.

Fear that you’ll never know what it is to really live (by a certain measure of “really living”). Fear that you’ll never be free to fully enjoy life.

Fear that you’ll never marry.

Fear that you won’t be able to provide for yourself when they (especially parents) are gone.

Fear that they (again, especially parents) messed something up or¬†are responsible for your pain, and that they won’t be able to fix it.

And potentially, fear¬†that the hopes¬†– the castles – that they (family or friends) built with their hearts for you – or to involve you – will come crashing to the ground, because your body didn’t get the memo.

And all you can do is sense their fear, and try with all your might to block it out of your head. Try to keep pressing forward, and not to let the outworkings of their fear get to you.

A parent’s emotional breakdowns. The moments when they’re just “Done with it all.” Because they¬†feel your pain as if it were their¬†own,¬†and feel guilty – perhaps even angry – that there’s absolutely nothing more they can do to fix anything.

Your loved ones’ frequently asked questions, “So [your name], what’s the next step¬†(meaning, next step to getting well or moving forward in life)?” and “Figuring out more foods you can eat?”

And all you can answer internally – or verbally, if you dare – is “I’m trying. I’m doing the best I can. The only solution is to give it time. To give my body time to heal. To keep doing what I am doing, and to keep researching. If I knew of something else to do, I’d be doing it. It may take months or years. And I may never be completely healed. But that’s okay.”

And you know that is definitely NOT what they want to hear.


The hardest thing is thinking about all the things you ought to be, ought to have accomplished, all the milestones you ought to have reached by now, but aren’t and haven’t.

The hardest thing is the social isolation and feelings of shame that can come from living a life utterly different from everyone around you, and thinking that most people must either judge or pity you.

And so you judge and pity yourself, so they won’t be the first ones to do it. If you hurt yourself enough first, then no one else can hurt you.

You begin to see some friends pull away, and that just reinforces all the negative messages and depressing thoughts you’re replaying in your head.

It’s¬†true, then. You are a failure. Evidently some of your friends are beginning to see that. And why shouldn’t they pull away?

You are a disappointment.

Again, and again, and again, that message – that condemning voice – plays mercilessly through your head like a solemn durge on a broken record.


I still have moments when I get really down. When I’m just so weary of all of this. I don’t understand why it has to happen to me, when I’m only 24, and there’s so much I wanted (and want) to do with my life. Why couldn’t this happen to somebody who doesn’t give a s**t about how they spend their time or their life? Somebody who would waste their time – in sickness and in health? Why me?


Only very recently have I come to accept the reality – initially with resignation, but now with an inexplicable glee – that I may never be “well”, in the sense that most people experience wellness.

Finally, I am beginning to see this as a gift.

You see, were I not in this place of extreme illness, I would never have ventured through certain doors. I would never have permitted myself to try certain things.

Things like, starting my own business online.

Reading, writing, and learning like it’s my full-time job, or college. (Although learning is something we are always [hopefully] doing anyway, even if that learning doesn’t involve literature.)

Trying the stuff that everyone ridicules. The things they say can’t make money (but, in fact,¬†can¬†be financially profitable – given smart¬†[as well as¬†hard]¬†work, persistence, and patience). Trying the things that are not supposed to be successful, by a certain definition of success.

I am doing those things. (I was going to say I am trying those things, but there is no try, there is only do. [I ‚̧ Yoda :)])

I am doing those things, because I don’t have a choice anymore.

The bridge has been burned, so to speak. Not by my hand (I certainly wouldn’t have chosen this situation) but, I believe, by God’s hand.

I’m in no place to be working in a brick-and-mortar building anytime soon (I’m extremely sensitive to toxic chemicals, even things like perchloroethylene (a dry cleaning chemical), materials used in building remodeling, and new flooring or carpet. I feel sick if I’m around other people who are eating gluten, even if there’s no gluten on my plate. Breathing in a few air particles – or even the vapors or smell – is enough to give me head pressure and make me feel unwell for at least the rest of the day.

I have no choice but to work from home.

I cannot afford to get completely wiped out and burned out again.

I still have days when I can barely move (though this is less frequently the case now).

I used to think that I could never be an entrepreneur. I had ideas, but didn’t know how I would implement them.

I didn’t think I could be successful at a business venture.

I figured nearly any business venture would require a significant financial investment upfront.

But I learned that that’s not true for all businesses. It depends on what product or service or commodity you’re offering.

If that commodity is information or creative content, the initial investment can be pretty small (save the substantial investment of time and mind-grease).

So here I am, doing things I’ve dreamed of for a long time, but never actually allowed myself to try. Or had the time to try.

Well, now I have the time, because my body won’t permit me to do much else.

 

I will plant flowers in this prison.

I will roar from my cage.

I will paint a picture behind this wall of glass, to reach people in places that I never could have touched with my physical presence.

I will sing a song in this lonely, dark cave, and trust that there is another soul in this same cave of whom I am unaware, hearing the echoes of my music – my joyful songs and laments – and being comforted with the knowledge that they are not alone.

Girl standing in cave, near spot where sunlight is shining through
Photo by Joshua Sortino on Unsplash

YOU are not alone.

I hear you. I feel your pain.

Perhaps there is something going on in your life right now, that you feel no one can understand.

You think everyone thinks you’re crazy, lazy, insane, dumb, lost, confused, deluded. Everyone is worried about you. Or no one is.

I see you.

I see the picture you’re painting, because you cannot speak with words.

I see the beauty that you are creating in your prison.

Don’t stop. Don’t give up.

Don’t ever for a moment believe that because your path is different, you are lost.

person on path in sunlight
Photo by Mahkeo on Unsplash

 

 

sunlight shining on lonely path
Photo by Cerys Lowe on Unsplash

 

Pain is not all loss. Pain is the price we pay for life’s greatest lessons and most precious gems.

 


What’s something you’ve learned or gained through chronic illness? I want to hear your story! ‚̧

Kate

person walking on forest path in sunlight
Photo by freddie marriage on Unsplash

 

© 2017 Kate Richardson All Rights Reserved

4 thoughts on “The Hardest Thing About Being Chronically Ill

  1. Pingback: Some Encouragement – The Bleeding Blogger

  2. Millennial Monk

    Perhaps alongside the flowers a beanstalk sprouts, growing until it reaches the skies, to be climbed so that one’s view reaches far and wide beyond prison bars.

    Liked by 1 person

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