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The Reality of Hope and Positivity for Someone With Chronic Illness

“You’re so negative!”

“You never know, your miracle could be right around the corner.”

“Instead of researching all that could go wrong, why don’t you just trust that something could go right?”

“So, this treatment is helping? You’ll be back to yourself in no time!”

“Think positive!”

“You’ve got to have hope things will get better if you want them to.”

If you’re living with a chronic illness, chances are you’ve heard at least one of these more than once from well-meaning people, and indeed, I used to think that was how I was going to survive — and beat — this beast.

After four years of living with chronic migraine disorder, in 24/7 pain, 365 days a year, I’ve learned a lot: This monster is genetic and neurological, there’s no cure, treatments only put a small dent in it for many sufferers, depression often comes with the territory and small victories matter.

I’ve also learned that when you’re living in the kind of sunshine and happiness most people picture as hope and positivity, each successive treatment that fails can crush your soul bit by bit. So I’ve had to alter my perceptions of hope and positivity in order to keep them alive.

To those who say I’m negative or hopeless, I have this to say:

You can’t make informed decisions about your care if you are not realistic.

Positivity and hope are not unicorns pooping rainbows and butterflies. For many of us, they are the acceptance of our condition and the strength to wake up and face each day and not give up.

It’s finding the best in a life filled with pain and uncertainty.

It’s not about spending life in pursuit of that one magic cure that may not exist — it’s about knowing the real chances that this or the next treatment may not work, but trying them anyway… and if it helps, well, then we can have a pleasant surprise.

And if it doesn’t, we’re not going to fall apart, because we didn’t put all our hopes in that basket. It’s how we don’t break each time something else fails.

It’s about knowing the real odds that even if something does help, it will likely not improve our lives drastically or dramatically, and learning to live with the small victories as if they’re an Olympic gold medal.

It’s about knowing that not only is each day an unknown and sometimes the next hour and the next minute are unknowns… but we will navigate them the best we can.

It’s about realizing you may not attain the dreams and hopes you once had in life, not because you don’t have the desire, but because there are limits both physically and mentally now that keep you from doing so… and reaching for new dreams and hopes, even if those are just a day at a time.

So don’t tell me I’m being negative when I don’t get excited by the next fad miracle cure, when I say I may never finish college, when I’m pragmatic about the odds of a treatment giving me my old life back or the possibility I’ll always carry the burden of pain through the rest of my life.

I am cautiously optimistic, realistically hopeful, and pragmatically positive — and if you aren’t in my boat bailing out the rainwater with me, don’t tell me I’m wrong for how I weather the storm.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.