What Hope Can Look Like When You Live With Chronic Illness

Sometimes we easily harbor hope and optimism. The fresh promise of a new year, a house move, an inspiring movie, a few good health days and we are full of enthusiasm. But this will usually pass.

For all that people love recovery stories, the reality of climbing out of the rabbit hole of illness is decidedly more un-glamourous. Chronic illness is so complex and multifaceted that most efforts seem invisible. They are tiny cumulative steps, and it can be easy to start questioning their value.

Hope is doing the work, holding the belief that healing is happening.

Plodding, repetitive things. Not you’re so brave and inspiring kind of things.

  • 30 pills a day, timed around meals, until you feel like a rattling Skittles packet.
  • Colonics taking precedence over yoga sessions (what would Instagram say!).
  • Drinking bottles of expensive electrolyte solutions (that taste suspiciously like bad tank water).
  • Sitting on the shower floor to wash, getting into clean pajamas and sleeping it off.

Small steps are still steps. A phrase I heard years ago springs to mind here: Imperfect action is better than perfect inaction.

  • Still having a sauna even though you can only do 20 minutes. Three short sessions a week is still a lot of toxins sweated out over time.
  • Too exhausted to set up a detox bath? A cat litter tray makes a good foot bath. (Preferably with epsom salt solution, not cat poo. But we don’t judge brain fog here!)

Hope is often disguised as its grit-your-teeth sibling Determination, or
the black sheep cousin, Stubbornness. Is it a will to win, or just a refusal to be beaten? It may not be inspiration hashtag material, but never discount Stubbornness. It has kept many going through horrendous situations.

What counts is doing the job, whatever carrot or stick gets you there.

Illness warriors are not just the front line soldiers, they are the entire army support chain: food provision, weapons repair, waste removal. Toxins, parasites and viruses don’t care what mood you were in, just whether or not you turned up and did the work. The enemy wears us down, with persistence and sheer numbers, waiting for a break. No matter what, we need to keep fighting.

  • The candida in your gut loves it when you say, bugger it, it’s my birthday, I’ll have cake. All that sugar sends them into a fungal fury.
  • The virus wants you to push through exhaustion to see your friends. When the payback crumples your immune system, it will gleefully seize the opportunity to replicate.
  • Did you skip a day of bitter herbals because you felt too seedy from die-off? The last few roundworms say phew, a break, nearly had us there.

Hope is still investing in the process even when you can’t see forward movement.

Hope is being a stubborn grinch, grumbling about your miserable, gluten-free, croissant-deprived existence, but sticking to the diet anyway.

Whether you call it hope or stubbornness, these decisions are the building blocks of healing.

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

Photo via KTVisual on Getty Images

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

Related to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Female Patient And Doctor Have Consultation In Hospital Room

What I'm Doing Differently After My Doctor Said, 'You Look Great!' When I Felt Awful

As I sat in the cold, sparse exam room, waiting for the doctor, I was hopeful he would have answers for why I still felt so bad. My legs were weak, my body was going from hot to cold and back to hot again. My skin felt creepy and sensitive. I was exhausted and lightheaded. [...]
A photo of the writer's black rescue rabbit.

How My Rescue Rabbit Has Helped My Physical and Mental Health

  Eighty-seven days ago I had a hospital appointment. I have been in and out of hospital all of my 23 years. When I was 8 years old, I developed a mysterious stomach condition that a doctor called “stomach migraines.” When I was 10 years old, I developed myalgic encephalomyelitis (ME), which now gets worse [...]
photo of the author next to a drawing of a man

How Chronic Illness Has Helped Me Find Myself

There was a time when I was in my late teens to early 20s when I had a lot of energy. And I had constant ideas for things to do with it – some reasonable, some grandiose. I wanted to travel the country, for example. I wanted to do hurricane relief post-Katrina. I wanted to [...]
woman opening the curtain to look at the sunrise

How I Remain an Incurable Optimist, Even With Chronic Illness

I am an incurably optimistic person. That is who I am, my heart, my soul and how I eat, live and breathe. Sometimes though, life even gets to the best of us optimists and that’s OK. Sometimes you have to give yourself permission to simply absorb reality in its rawest form. Take your moment for all [...]