A Rant About Ableism

Recently, one of my doctor's appointments was made without consulting with me. I was called by the nurse that made the appointment (and yes, it was the real-life Kyle) who just called and told me the appointment time. No negotiation, no "pick from a list of these times". It SUPER bothered me at the time. At first, I wrote it off as just being bothered by everything lately, because I am, and so just add this to the pile, but it continued to stick. I couldn't let it go. It was for my radiological oncology appointment - my first one. I called to change the appointment, but I couldn't without messing with the timeline for treatment, and the conversation yesterday (after trying three times unsuccessfully over the past week and a half to get this appointment changed, I finally got someone on the phone) went something like this:

Me: Hi! I'm scheduled for an appointment in early September, and I need to change it.

Scheduler: Ok! We can get you in for a consult in mid-October.

Me: I can't wait that long without messing with the timing of treatment, which has to be done within 3-6 months of my diagnosis, and I'm already 6 weeks post-surgery, so I'll figure it out and just keep that time. Also, can I ask? Why was this appointment made without consulting me in any way?

Scheduler: That's just how we do it.

Me: You should change that practice immediately. My very busy life does not center around this diagnosis and I'll have to change my whole schedule around to make it. Moreover, who says that's a good practice? Why is that policy in place?

Scheduler: Well when works better for you? (Do you see how she turned it around there and didn't answer my question? Her tone also suggested that I was being entitled about it. Nope!)

Me: I don't understand how that's relevant, but mornings work way better for me.

Scheduler: Ok. We'll remember that for the future. In the meantime, we'll see you on September 9 at 1:30.

I had a meltdown of nuclear proportions about this. I was so pissed that I didn't even know what to do with myself. Once I was done melting down about it, I sat with it. Why such a strong reaction?

What I realized is that the reason for this is because they have me by the balls, and they know it. I had another doctor's appointment at that time and had to cancel it, and I also had times that I needed to see my clients during that time and I had to shift it all around. 

The thing for me is this: they deal with cancer patients all day. There's a sense of powerlessness that I've felt about this that I've never felt before. I'm in the middle of a time in all of this medical stuff where I need to be able to have some semblance of control over what's happening to me and my schedule is where I find it in spades, and it was taken away from me in a blink. Is this objectively a big deal? No. To anyone who isn't going through this, of course it's not. But, I can imagine that for other people going through similar, or even more severe things like this, they may feel the same way as I do. The person on the other end of the phone doesn't know or realize that, and neither does Kyle. Neither does anyone who has never been through it. There's a privilege that comes with not having to grapple with something like this that I think a lot of people don't realize.

What I also realized was that this wasn't just about the appointment. It was about the powerlessness. I felt a big piece of grief yesterday that I've been pushing away for awhile, and it has to do with my utter powerlessness to stop what's happening except to accept it and go through the motions of being treated, and there are many things about which I don't have a say. It's so surprising how some of this stuff bubbles up, and what can push on that button unexpectedly.

There's also a piece of this that isn't about me at all. When you have multiple medical things that you're juggling, it's its own full-time job. For someone to just swoop in and assume that you can make it work and figure it out, it goes beyond rude. It goes beyond disrespectful. Due to the nature of my work, I know a lot of people who are managing multiple medical things; I've heard time and time again the frustration of trying to manage schedules and "Oops I have two doctor's appointments at the same time, I can't believe I did that, and so now I need to use my triage skills and figure out which one to keep and which one to reschedule", and from a patient care standpoint, the idea of just scheduling a time for someone without their input is so deeply ableist. It hits two ways: The first is that medical organizations, by doing this, show you that they operate under the assumption that you can't or won't do it yourself. The other is that if you can't make it work, that's just further proof that you can't manage it on your own. The power differential between doctor and patient is only further reinforced that their time is more important than yours, and they have you by the balls, so you are the one who has to make it work. Patients are screwed either way and are treated like they don't know what they need in terms of their own care.

This is changing how I practice clinically, without a doubt. My availability is drastically changing due to all of this medical stuff, and while I don't have control over that, I'm definitely putting more of a priority on letting my clients have more say over when we meet when I'm able to do that. I think that the more say we can give someone when they're going through something hard, the better. Also, the more we can give them the space to say "I need help with this" to the people who are there to help them, the better. Make it safe to ask for help and to change things up a bit in the most basic of ways, and I think people underestimate how much easier that will make people's lives.

I understand that doctors be doctoring. I understand that I'm not the only patient. I understand that they have schedules to keep and patients to treat, and there is a limited amount that I can do about that. All I want is a shred more of understanding that I need a say, too.

At least that's what I'll be telling the patient feedback department when I call them later to start the advocacy train rolling about this.

What a Difference a Year Makes.

I'm rounding out a year since my Lynch Syndrome diagnosis, which is the definite marker for all of this stuff starting. It's weird to think about so much happening within the past year for me health-wise, but I have to remember that this health stuff is not the only stuff. For instance:

1. We adopted a dog. Three months later, we lost our eldest dog in a way that ensured that he did not suffer and it was as quick as we wanted his end to be without too much suffering on his part, and for that I continue to be infinitely thankful, as hard as this grief has been. We still miss him every day.

2. I gained my confidence as an independent clinician and finally figured out what the hell I want to do with my life, and made active steps to go toward that.

3. I SURVIVED A DAMN PANDEMIC. (This still continues.)

4. I totally tweaked my working style and how I operate and I got used to doing telehealth 8-10 hours a day.

5. Once I had all of my ducks in a row logistically, I filed paperwork to start my own business in November 2020. I picked a logo. I started advertising.

6. I dipped my toe in starting said business in January and as quickly as I opened, my tiny caseload filled.

7. After my hysterectomy, I jumped in with both feet into the deepest possible end of the pool and gave my notice at the group practice at which I worked, and started making plans to hang a shingle in an actual office.

8. I surrounded myself with colleagues who are amazing and supportive and I'm creating the exact business I want, and it is booming.

9. I taught 6 classes! All while managing health stuff and starting a business and figuring out a pandemic and moving it abruptly online a year and a half ago!

10. Mostly, I realized that I can't wait on my health being better to be the point at which I start taking care of myself better and more intentionally.

The Universe is sending me a BIG sign. I was out for tea with one of my favorite humans the other day, and he was like "Um. Either the Universe needs to send you WAY less harsh signs, or you need to listen when there are less harsh signs being sent." (I have a hunch it's the latter.)

There are a lot of things over the past year that I've realized that I don't have time for. I don't have time for how other people's opinions if their intention isn't to be helpful. I don't have time for people who assume that just because I'm talking about something that it means that I want advice about it. I don't have time to waste on people who aren't as curious about me as I am about them (if they're not my clients). I don't have time for people who invalidate what I'm going through. I don't have time for other people's reactions about my incision scars or how I will look after said surgeries. I don't have time for other people's opinions about my body.

But you know what I unequivocally, without a doubt no longer have time for? I don't have time to not avidly and rabidly take care of myself anymore. I put it aside in all the wrong ways for so long at the expense of my health at every turn, and at the expense of so many other things. The past few weeks in particular have been an eye-opener. Self-care has become my foundation and it's the first question I ask myself before taking on something new - "Is this in the best interest of ensuring my mental and physical well-being?" If the answer is not an unequivocal yes, then I say no to it.

I've been openly avoiding using the c-word when it comes to my thyroid stuff, and I can't anymore. I'd been scared about this moment for literally decades, and here it is. When my biopsy came back as questionable back in November, I started having to put myself in the mental place that eventually, I'd get a thyroid cancer diagnosis. I envisioned what that might feel like, and how I might react. When the diagnosis actually came after my thyroid surgery, it was nothing like what I expected. I didn't feel as scared because I felt mentally prepared, I knew what the likely plan would be, and I had done so much digging and ruminating and spiraling that I'd already done the hard part emotionally. Also, the types (two) of cancer that were found have an astronomical cure rate - 90-95%! And, the first line of treatment had already been done - surgery - so, the rest of it will seem like a cakewalk compared to the recovery from the surgery, which has been hard and is not yet fully done. My numbers are currently so good that "they're what I'd expect to see from someone post-radioactive iodine," my doctor said to me. As of right now there is no spread, but I'll know more once the full body scan happens in a few months, and the radioactive iodine will get it no matter where it might be in my body. But for now, we adjust to the unabashed fuckery that comes with trying to get my hormones in balance after eliminating estrogen, progesterone, and thyroid hormone-producing organs and suppressing my pituitary gland so that it doesn't freak out and make my body start regrowing thyroid cells, which is a tall order. We caught it so, so, so early. I feel like a little bit of a fraud because I don't have a "hard" kind of cancer that's going to require chemo and months of pain and suffering to kill it. Will suffering happen? I won't be able to come in contact with my husband for five to seven days because I'll be radioactive, and there's all kinds of weird stuff that's going to have to happen from that, but by and large, easy peasy, but yeah, there will be. I have to internalize the idea that I have to be monitored for recurrence for the next 10 years. My chances are GREAT because it didn't spread anywhere and we got it all, but it's still a hard thing to sit with.

My point is that I have to make room for this stuff, all of it. I have to make physical room and logistical room in my schedule, and that means adjusting my caseload and taking enough time to do everything logistically, and making sure that I'm tending to my own physical needs at the same time, because all of this stuff is really physically taxing. I also have to make room emotionally. The amount of support I have gotten during this time from my family, my friends, and my colleagues has been nothing short of astounding, and I just feel really fortunate. At the same time, this is really hard. There's a lot to work through here, and it's just a matter of giving myself the space to do it.

I also have to recalibrate my definition of easy peasy. I talk about this medical stuff and I've been able to internalize it because it's literally three surgeries, with this thyroid stuff a couple of extra things, and then it's done. That feels easy to me, even though intellectually I know it's not. Recovery from these things has been hard. Coordinating this care has been hard. Having my literal life in the hands of a system that I don't inherently trust has been hard. Not being able to operate at full capacity has been really, really hard, especially since I have so many exciting things happening, and it feels like I can't be fully present for them.

These next few months are going to be a journey. I'm facing the hardest leg of this health journey yet, and that's not lost on me. I am facing treatment not just for the cancer, but also potentially brain surgery within the next few months if we don't take a wait and see approach (which is looking less and less likely judging by how my body is behaving since my hormonal system has totally changed).

That being said and weirdly enough, I feel physically better than I have in a really, really long time. Migraines have gone from weekly to rare, I sleep like a champ when I can get there, and my mental health is pretty great at the moment. As soon as I get over this hump, I'm training for a marathon. It's happening. My goal is to run one by 45, and I think I can do it. The beautiful thing about this health stuff is that it's all one-and-done - there's no prolonged treatment, there's no having to go through super long periods of recovery (though my thyroid surgery recovery has felt super long, I definitely know that it's only been six weeks, which is basically nothing) after really difficult treatment, and I'm going to bounce back from all of this and be better than before. I just know it. There's a ton of hope to be had, and I'm here for all of it, even when things get hard.