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.

The way I see it…

“We just see things differently,” is something I’ve heard a lot recently. And I suppose that’s true.
Where some see oppression, I see an accessibility tool. I am able to navigate the world more safely when both myself and others are wearing masks.

Where some see a violation of rights, I see concern and kindness for others. A person’s willingness to wear a mask for the protection of the people around them is, to me, an incredible act of love.

Where some see “fake science” and biased information, I see sound evidence coupled with years of personal experience. I’ve worn masks for decades (with lung function as low as 27%) without ever experiencing complications. My team of care providers and dear friends in healthcare have safely and effectively worn masks throughout their careers, sometimes for the duration of entire shifts or lengthy surgeries. (Spoiler alert: they’re all fine.)

Where some see “sheep” blindly complying and following sinister orders, I see community, love, unity, and a combined effort to care for one another and combat our common enemy.

If the way I see things turns out to be wrong, I will have unnecessarily worn a mask for a few months. No biggie. But if the way I perceive things is correct, and people have refused to take precautions, we’ll experience a tremendous amount of preventable loss and heartache.

I’ll wear the dang mask. This is something I’m willing to be wrong about.

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? 

We’re on the same team

As I was lying awake last night due to the pain I was feeling with each breath, instead of trying to count sheep, I found myself counting the number of months since I’d been in the hospital. Then the number of days until my upcoming surgery and the number of times I’ll make the two-hour drive to my hospital in the next month. I finally fell back to sleep around the time I was counting the weeks since I’d experienced this familiar pain in my chest. It’s been a while, and for that, I am grateful.

Having a chronic illness feels like constantly being at war, only the adversary isn’t an unknown enemy, it’s your own body. You fight battle after battle, all the while knowing that there’s no end in sight. Even when the dust seems to settle for a while, the enemy is planning its next attack. You can never fully rest because you’re always cognizant of the fact that if you let your guard down, your opponent will take that opportunity to sucker punch you right in the face then laugh as you spend the next few weeks or months trying to recover.

It’s endless. It’s exhausting. It’s absolutely draining.

I was contemplating these thoughts this morning as I sat drinking my coffee, trying not to anger my lungs by taking too deep a breath. This specific type of pain is not entirely uncommon. In fact, it’s a classic sign that I’ve pushed my body a little too hard. This is simply what she does when she’s worn out. Extra treatments, some targeted manual CPT, plenty of hydration, and some rest should resolve this issue. I’ll be fine.

That’s when I realized something: my body is telling me exactly what she needs right now. Is that what the enemy would do? In a true battle, the opposing side doesn’t give you a bullet point list of instructions, but that’s oftentimes exactly what my body does (if I’m willing to listen to the clues she gives).

My body isn’t the enemy, this disease is!

My body does nothing but fight for me – that’s literally all she does every single day. She fights through exacerbations. She fights to keep me breathing. She fights through side effects of medications and unpleasant medical procedures. She fights to carry me through my day-to-day life. She fights so I can enjoy days with my family and spend more time with my daughter. She fights to give me as normal a life as possible.

I have to stop thinking of my body as my nemesis and remember that I’m not fighting against her, I’m fighting with her. We’re on the same team! I’ve often said that I feel betrayed by my body, which is neither kind nor completely accurate. I’m a huge advocate for body positivity and unconditional kindness toward oneself, but I’m a total hypocrite! I’m always saying things to and about my body that are negative. My lungs suck. My sinuses are a wreck. My joints are busted. My pancreas is worthless. If anything, I’m the one who betrays my body by being so hostile when things aren’t going my way.

I’m the jerk, not her!

So I’m trying something new. I’m going to make a real effort to treat my body with absolute kindness. I’m going to stop portraying her as the enemy and remember that she truly is my best friend and biggest ally. I’m going to reframe my thinking in moments of pain and frustration. What is my body telling me? What does she need? Rather than thinking of all the ways my body holds me back, I’m going to focus on being grateful for the truly amazing things she does.

My beef isn’t with my body, it’s with the monster that lives inside. CF is the enemy, and my body? She’s not a traitor, she hasn’t betrayed me; she’s a miracle (and honestly, kind of a badass)!

If I’m lucky, we’ll be battling this disease together for a long, long, very long time to come.