In my time as a patient advocate, I have come to realize that a lack of trust between parties – clinicians, hospitals, insurance companies, patients, etc. – is the root of a majority of the problems and roadblocks within the system that we currently have no choice but to deal with. On the patient side, that stems from the fact that, based on their policies, it’s hard for us to believe that our well-being is a priority for the rest of the stakeholders.

Case in point:

I have a friend. She recently had a beautiful, healthy baby girl – such a little blessing.

My friend’s first baby was fairly drama-free but, when we caught up recently, she told me that this time around was anything but. One particular episode stood out to me.

Judy was one of the ones I lost last year. More than a friend, she was like an aunt or a surrogate parent.  I spent weeks at her family’s house in the summers when both my mother and I needed a break from each other. Her husband was my dad’s best friend, and her boys are like the older brothers I never had.

She was loving, generous to a fault, down-to-earth, and practical.

So, she knew. That day her oxygen dropped to catastrophic levels when the BiPAP was obscured for just a moment or two, she knew that there was no coming back.

I’ll just say it. 2023 was an emotional cluster%@!#.

I have always been able to handle whatever life has thrown at me with healthy adaptive and grieving processes. But death has always been the hardest trigger for me, ever since I was 10 and I lost both a grandparent and a close family friend, who was supposed to be ok after a heart attack, but never made it out of the hospital. My mom’s death in 2001 just amplified the trauma of those first couple and all the ones that happened between. I have my coping mechanisms, but last year they weren’t enough.

I started 2023 with an open emotional wound caused by family drama that wasn’t about to be cleared up any time soon. It still isn’t. Then, my dad’s best friend died in a mirror experience to my mom’s death – same disease, same steps, same process. It was really hard.

I am writing today to let you know why I won’t be coming back.

You came highly recommended by someone I trust more than almost anyone else in the medical world.

However, the first red flags came before I set foot in your office when your scheduling staff told me I would need a referral even though my insurance company did not. This is a blatant money grab employed by hospital systems that is happening more and more often. I know this is a policy you may not control, but it was off-putting. Maybe if it had been the only thing, I could have gotten past it.

But there were other things, both administrative and personal, that didn’t work for me.

I haven’t had to look for one of my core team of doctors for over a decade, but this year I am looking for two, a nephrologist and an endocrinologist. It is a nerve-wracking process and makes me feel unsettled.

I lucked out for the first one, the nephrologist. Someone gave me his name. Of course, I held onto it for way too long before scheduling an appointment. But in the end, I lucked out, and he fit what I was looking for.

Perhaps that spoiled me for the next one.

I dwell too much on the past. I’m optimistic about the future, but I am not a futurist.* I would like to be more of one, but it’s hard when the past is so heavy and every time you try, some new medical development comes along to shake up plans and expectations.

I think sometimes that this state of being has hindered my development as a person. A lot of my biggest medical milestones – none of them good – happened during the years when most people are developing their socially personalities.

I am a luddite. If you’ve never heard of luddites, they were the anti-tech people In England during the industrial revolution who would burn down factories because they were afraid automation would take their jobs. These days, it’s a word that describes people who are generally resistant to technology.

If you know me, you know I would much rather be using a pen and paper than my computer. And I often let my voicemail box fill up so I don’t have to interact unless I want to. (To be fair, that may be more anti-social than luddite.) I use social media minimally and I still won’t deposit a check by taking a picture on my phone. I could continue, but you get it.

These days, I am irrevocably tied to technology.

I wasn’t great at science or math when I was in school. I wasn’t bad, I just wasn’t that interested. There was so much fantasy to read and history to learn. I guess the joke’s on me that I now have to practice biochem literally every day.

That’s what having a chronic or autoimmune condition is. You learn how your body works in its unique, broken biology, and you learn how your biology works with the chemical treatments prescribed to manage it. Everyone’s set of symptoms and severities is different. There are parameters, but there is always the possibility of being thrown for a loop. The period right after diagnosis is rife with indicators, but sometimes it takes a while to notice them.

Do you remember Successories, those posters (and so many other products) that had “motivational” sayings on them? Fifteen or twenty years ago, they were everywhere – offices, dorm rooms, and gyms across the country. [Full disclosure: I had a desk calendar. Our office manager chose it.] I suppose the idea was that if you were struggling with Gratitude, Collaboration, Excellence, Integrity, Perseverance, (all those things you’re already bringing to the table), you could just look at one of those posters and muster the strength to be all you could be, to borrow an Army slogan from roughly the same timeframe.

I have seen a lot of articles mimicking that sentiment directed toward patients struggling with difficult conditions. The main theme is, “Everything is going to be ok. You’re going to be ok.” That’s good some of the time. Not all of the time. The fact is, these conditions are scary. Sometimes you’re not going to be ok. And that’s ok.

I’m not an activist. Or I wasn’t. Too much of a commitment. Takes too much time. Too public. Too much baggage attached to that word. I just wasn’t interested.

But the same change in perspective that helped me start sharing my experiences on this blog also caused me to start rethinking other positions I held. I was hesitant when the first activism opportunity came to me. I was already spending several hours a week on the blog in addition to my full-time job and taking care of my conditions.