The stuff of nightmares

Early this morning, right before she awoke for the day, Morgan had a dream that I lost access to my medications. She then sent the following text from under her covers with tear-filled eyes.

“Momma, are you gonna lose all your meds?”

This is the fear we live with. I don’t just mean myself or my family, but also millions of others who are disabled or chronically ill and rely on expensive medications to stay alive.

While I currently have access to comprehensive healthcare and affordable prescription copays, I know firsthand that something as simple as a small change in personal circumstance, the whim of a health insurance company, or a faulty piece of legislation are all that stand between myself and a total healthcare crisis.

It’s exhausting.
It’s frustrating.
It’s sometimes terrifying.

This morning, after receiving her text, I called Morgan in to my bedroom to talk about things. We both expressed our thoughts, I offered reassurance, and we snuggled for a while. By the time we got out of my bed we were laughing, and I think that for a while at least, her worries have subsided.

I’ve said before that living with CF oftentimes feels like waiting for the other shoe to drop. Even when things are going well, uncertainty lurks in our minds and the minds of those who love us.

It is quite literally the stuff of nightmares.

A love story (of sorts)

I’ve said it before, and I’ll say it again: I don’t need flowers, poems, or over-the-top gestures. One of the most romantic things Randy does for me is sterilize my nebulizer cups.

But it hasn’t always been that way…

Spending a lifetime dealing with the challenges and unpredictability of CF can make a person (me 🙋‍♀️) long to control whatever tiny thing they can.

The things I can control are related to my healthcare routine. I may not get to determine the outcome or know what bumps lie in the road ahead, but if I do everything within my power in a very specific way, I can face the unknown with a bit more composure.

(Yes, I’ve talked about my control issues in therapy.)

When Randy came into my life and wanted to start helping with things related to my care, I wasn’t sure I wanted him to! It took a long time for me to let him take over certain tasks (even small ones like sterilizing nebs) and it wasn’t an easy thing for me to do.

But in time, I learned that letting go of some of the smaller things is not only okay to do, it’s pretty freaking awesome!

While he and I both know I’m totally capable of doing things on my own, it’s nice to know that I don’t always have to.

He’s got my back.
And my nebs.
And to me, that’s real love.

Unsolicited advice for the chronically ill. Maybe just… don’t.

“Try CBD oil. Stop taking those toxic medications. Push yourself a little more. Don’t push yourself too hard. Keto fixes everything. Have you tried meditation? Pray more. Take these vitamins. Drink more water. Have you considered an exorcism?”

Raise your hand if you’re heard these (or other) nuggets of wisdom from a well-meaning friend or stranger on the internet.

Receiving unsolicited health advice is a given when you have a chronic illness. We, as humans, have an innate desire to fix things. Unfortunately, that also applies to other humans that we assume are “broken” and in need of aid.

Giving someone unsolicited health advice implies that you know more about their condition than they do, they haven’t done everything within their power to help themselves, and they aren’t capable of researching their options and making the best decision for themselves.

This is not to say that all advice is unwanted. I’ve gotten some great advice regarding my health! The difference is – sometimes it’s asked for and other times it’s aggressively thrown at me without any warning or desire on my part.

If someone wants advice regarding their health, I promise you, they’ll ask for it!

But if you absolutely must share your thoughts on something, there’s a proper way to do it. For example, saying something like “Hey, if you’d like more info about _____, let me know” is so much better than, “You MUST try ____! If you don’t’ you’ll be sick forever! A friend of a friend of my grandma’s cousin tried it and was totally cured. Also, CF isn’t even a genetic disease, it’s a mineral deficiency.”

(That last part is something I’ve actually been told.)

To you well-meaning friends out there who just want to help, I know your heart is in the right place. But empathy and sincere questions from you feel so much better than trying to be fixed.

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After I posted about unsolicited advice yesterday, I got a message that essentially said, “People are just trying to be nice. Listen to their advice and be grateful that they care.”

Imagine that – more unsolicited advice!

But I get it, I really do. I knew there’d be people who’d read that and think I was overreacting. They might think I’m making a big fuss over nothing – people are just trying to help. What they don’t understand is that this kind of unwanted advice is more than just a little annoying, it can be incredibly damaging. And here’s why…

It sends the message that we’re not trying hard enough, that we could “fix” ourselves if we really wanted to, and that we are not the expert on the medical condition we live with every single day. It blames and shames the person who spends their entire life fighting something they didn’t cause or ask for.

It’s invalidating and condescending when someone believes they know more about your condition from a bit of Googling than your doctor with their expertise and your everyday lived experience actually having an illness.

It’s painful to hear that you’re not living your life correctly and that maybe your symptoms are your fault (which is what this kind of advice implies). While someone may think they’re kindly offering helpful words of advice, the weight of those words is troubling and emotionally burdensome.

Out of respect for disabled and chronically ill people, trust that they (and their medical teams) are the most knowledgeable about their own health and lifestyle needs. If you do give advice or suggest a product and someone says they aren’t interested, respect their wishes!

When someone already spends so much time and energy doing all they can for their health, the last thing they need is someone telling them they’re not doing it right. Unsolicited health advice is intrusive, ableist, invalidating, and emotionally taxing.

So, while I am grateful that people care, I don’t have to be grateful for their advice.

And you don’t have to be either.

What are your thoughts on all this? Have you been the victim of unsolicited advice? What’s the worst or most bizarre piece of health advice you’ve been given?