Secret Fears

Or perhaps not so secret.

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70% of marriages in which one spouse has a chronic illness end in divorce.

What if you wake up one day and your significant other has decided he/she has had enough? They just cannot deal with your issues any longer. They want to live a full life and you are a hinderance. They need someone who is able. Someone who can bike or run or move. They never get invited to activities because you can’t go and your friends don’t want to invite just your spouse. They no longer want to sit in an empty pew or empty row.

I’m afraid because I completely understand how that could happen. (We live with ourselves, too.) And it’s not wrong to want those things. We want our other-halves to live life, to be content, happy, fulfilled and sometimes, we’re afraid we ARE a hinderance. We tend to live with a lot of guilt – unnecessary or not.

And we feel bad for feeling guilty. Or for even entertaining thoughts such as this post. Or for suggesting our spouses would get tired of us. Or for thinking they’d be the bad guy if they left. We feel bad for feeling bad about being unable/disabled. We don’t want to claim “victim” but sometimes we do. Because that’s true, too.

It’s an all-around crappy situation. No one is wrong and everyone loses. So we hide our fears. Watching ourselves become blobs. Sometimes not feeling because it’s easier to be numb. Hoping that when our partner says, “I love you and want to care for you,” that the desire to do so will last 50 years. Secretly afraid it won’t. Not because we don’t believe them but because we know it’s hard and it sucks to be shackled to a spoonie.

How do you handle such fears?

Acceptance is a broken record

Every day I have to re-accept the terms my illnesses lay out for me. It’s continual. I don’t live in a democracy, I don’t have a say in anything. Ultimately, my body is in control.

No, I’m not being obsessive. Nor am I being negative. These are the facts. This is my reality. Every day. Minute by minute. Acceptance is a broken record. They’re always there, these illnesses, demanding attention.

I have to come to terms with my new “normal” on a daily basis. Some days are easier than others. Some days I cry because cleaning the bathroom has worn me out so much I feel sick. And I don’t want to accept that.

Yes, there are things to help me cope with my pain, but it never goes away and that is the part that is hardest to accept. Chronic is a heavy word.

I am very thankful for my husband because he makes accepting easier. Understanding is worth more than pain killers.

I do what I can when I can. But it’s still hard, not being able to just do what needs to be done because my body will not cooperate. Having to lie down all day because my body has decided it’s too painful and too tiring to sit up. Being unable to do what others think will help me feel better, such as exercising or getting out of the house.

Being judged or labeled or misunderstood is very hard to accept, but its part of the package. Losing friends and freedom. Being unable to explain anything so they might understand. Sounding like a broken record. Sounding like all I do is complain. Having to cancel plans at the last minute. Have I mentioned sounding like a broken record? Yeah.



Humans are selfish, it’s just the way things are. We cling to false hope and love with grubby fingers expecting miracles. But we want it on our terms. We want peace our way, love our way, hope our way.


And its not until we’re lost that we can be found. And we get lost over and over and over.

I’m at the bottom of my well, lost in heavy, thick, black. Sometimes it feels like I can’t breathe and everything I wanted life to be is piling up on top of me. False hopes and love crushing my very lungs. I reach up and up and up to a Voice that promises real peace, real hope, real love and I hold on to that because that’s all I can do.

I have no answers, no reasons, no explanations … just a distant Voice telling me to “hold on.”


You will be stretched. Your soul will ache. Hurts will haunt you in starless nights, yet the Voice remains. Sleepless nights with endless tears wondering why, why, why. And the Voice whispers, “hold on.”

And I realize this life isn’t about me.