The Point of Continuing to Fight When Your Illness Is Never-Ending

What is the point of using up so many spoons on “good” days when the bad days are so bad they put you back at the starting line? What is the point of waking up at the crack of dawn to push yourself through something when your painsomnia kept you up all night? What is the point of going to the park with your kid when all you can do is sit and watch – you can’t even push her on the swing? What is the point?


What is the point of trying to work – trying to support yourself – when you have to use every single vacation day you earn as a sick day? What is the point?

What is the point of spending every extra penny you earned on alternative therapies and herbs and holistic treatments in desperation to ease your pain? What is the point of taking those meds that save your organs when all they do is make you feel sicker in the present? What is the point?

What is the point of showing up to your kids’ school event or sporting event when the other parents are looking you up and down – judging everything from the pajamas on your legs to the rash on your face to the bald patches of skin protruding from under the little bit of hair you have left on your head? What is the point?

The point? The point is this. You just do it. You try. You keep going and you keep succeeding. You push through because you have to. You work your ass off on the “good” days because the stronger you can get your body, the better chance you have of surviving the bad days. The more we take care of our bodies when we can, the more equipped they are to fight this never-ending battle of illness we as spoonies endure.

woman receiving an IV infusion in her arm

Some days pushing through involves getting up and moving as much as you can – prepping good foods that nourish your body, taking and refilling all your meds, laundering your clothes and your sheets to make everything just feel better, talking to a friend to calm your nerves and to get happy vibes up in your brain, exercising to care for your joints, your muscles, your bones. Some days pushing means pushing yourself to keep breathing, to keep fighting, to see the light at the end of the tunnel when you’re bedridden.

Pushing is different each and every day for us, and that’s OK. We all wear our pain and our battles differently. Continue to fight. Continue to rise. Continue to prove everyone around you wrong. Because you fucking deserve to.

This post originally appeared on Spoonie Strength.

We want to hear your story. Become a Mighty contributor here.

Find this story helpful? Share it with someone you care about.

Related to Behcet's Disease

woman receiving an infusion

The Impact of Doing My Treatment at Home Instead of the Infusion Center

For the past six months I have been doing Remicade infusions for Behçet’s disease at a infusion center near home. As a stay-at-home mom I loved that day out. I sat for hours in a reclined chair in total peace, recharging for the month. Then I would leave my disease at the door of the Abrahmson [...]
Latina woman crying.

When I Realized My Illness Would No Longer Be 'Ignored'

Today I cried. And I hate crying. I long viewed it as a symptom of weakness, and I was strong. I was a bad ass. I don’t cry. I was raised to be stronger, better, and work harder. It was instilled in me from an early age by my mother. She knew as a woman [...]
woman receiving an infusion and smiling next to a man

Why I'm Glad I Didn't Follow the New Year's Resolution I Made About My Illness

At the beginning of 2017 I vowed this would be my best year yet. After spending the last two years searching for a diagnosis and trying to achieve remission, I was ready for some big changes. I had my whole list ready of everything I needed to be my best self. I wanted to master [...]
sunset over a lake

How I'm Using My Journey With Behcet's to Shine a Light on Rare Disease

My husband and I are urban explorers. We go into abandoned buildings – the saggy, unloved ones – and shine light in the dark corners. Our cameras find beauty and order in the chaos. We share the results with others. It’s profoundly satisfying. Now let’s make a few substitutions, so that “rare disease” is the [...]