Would it be different if I weren’t a woman?

August 21, 2019

I started a new medication. My doctor and I had discussed beforehand that the dose I wanted based on my research was higher than what he suggested. We agreed I would start at his level, then go up only if needed.

For the first two days I felt absolutely horrible. I increased the dose and felt less bad. I increased more and felt better. So I stayed at the higher dose for a bit. It still wasn’t having the effect I had hoped for, but I needed more time, and the higher dose meant my prescription would run out early. I messaged my doctor to get a new prescription.

My doctor said he didn’t remember discussing the higher dose and thought I should be on a lower one. We went back and forth several times in email. I was anxious: challenging doctors can be problematic. I don’t want to be considered a “difficult” patient. I want my doctor to like me so he’ll help me more. Many doctors dislike being questions. Many people dislike being questioned in general, of course, but doctors often have big egos, and are treated like they know it all.

As I talked to my therapist about my anxiety, I discovered two interesting things. First, she helped me connect my anxiety to the way some medical practitioners had treated me in the past. It all made sense when she connected the dots. In fact, it seemed obvious, but I hadn’t seen it.

Second, as I spoke, I said that this wouldn’t be a problem if I were a man. I didn’t even realize I was thinking that; it just popped out of my mouth. And the instant it did, I knew it was true. I had an imagine of the conversation I’d had with my doctor in his office when he prescribed this medication. I thought about how I presented my own research and his reaction to that. He wasn’t entirely dismissive, but he didn’t really consider it, either. And I felt that if I were a man, he would have actually listened to me and considered the merits of what I presented.

Am I right? Who knows. I can’t test this. But here’s what I do know: it is documented that women and men are treated differently by medical professionals. You can read about it here and here, among other places. Sometimes I wonder if this entire journey would be different if I were a man. I’m not saying men have it easy. They are often maligned for “giving in” to symptoms, and they are discouraged from expressing and dealing with the complicated emotions that come from living with chronic illness. Still, I wonder. Would I be taken more seriously? Would I get of the tests I request, less resistance to the treatments I want to try? Would a doctor still have refused to give me a medication in my late 20s because it would cause infertility, even though I told her I was willing to risk it?

Obviously, I have it easier in many ways, too. I am cisgender, petite, white, and well-spoken. That gets me farther in a lot of situations, including medical settings. I am bisexual, but most doctors don’t know that, just as most don’t know that I am Jewish. Still, this question about gender weighs on me.

I am curious, what experiences have you had in medical settings that you think may have been different if you presented as a different gender? I’d love to hear about them.


Debating the line between private and public

April 27, 2019

Today I spent a while editing something I wrote that will be published in a book. Unlike this blog, though, it will be published under my real name. I have gotten so used to writing under Ms. Rants, that I’m feeling a bit confused about this.

In the past seven and a half years I have published 736 posts on this site – yikes! Before I looked it up just now, I guessed it was around 600. That’s a lot of writing, and a lot of posts, during which time I have gotten comfortable sharing a lot. I have spoken about strained relationships, deep fears, and incredibly embarrassing moments. Yes, I know that nothing online is ever completely anonymous, but it’s unlikely that someone will care enough to dig into this tiny little site that doesn’t even make any money to try and find the author, never mind actually make that information public. And if they did, what are the odds anyone would care? This book, on the other hand will be much more widely read, we think. My name will be out there and searchable. And that makes me question, what do I want to share?

This is a question we all make every day in a thousand tiny ways. Today I had to bring my car to the dealer for recall-related repair. What a pain in the butt. They said that at least I would get a voucher for free food from their cafe. This surprised me, and without thinking I said thanks, but that I couldn’t eat anything there because I have Celiac Disease. I didn’t have to say that. I could have said thank you and just left it at that. But I try to bring up Celiac Disease frequently as a way of educating people, and now it’s habit. I want people to hear about it in benign situations, where they don’t feel like “the whole gluten-free thing is blown out of proportion.” That way when they do hear someone requesting gluten-free food, maybe instead of judging that person as being “difficult” they will remember that Celiac is a real problem for real people and instead they might just have some compassion. No, I don’t expect to change minds with throw-away comments, but I figure if they hear it from multiple people, it could have an impact.

I often get asked why I wear knee braces, why I’m limping, or something else that is none of their business. How I answer depends on the person, the way they asked, and my mood. If I don’t feel well, they won’t get a nice answer. If I feel good and have time, and they seem nice and open, maybe I will explain a bit.

But these are all relatively anonymous. The car repair guy knew my name, but that’s just one person, to whom I told one small fact. Now I am considering telling a lot more of my story – my journey through symptoms, diagnosis, shitty doctors, supportive doctors, horrible insurance problems, and all the rest – and telling it to many more people. I don’t mention family or friends in the story, it’s just about me, so it is all my decision.

I always lean towards sharing more. I think we, all of us with chronic illness, will help each other the most by being honest. That is why I made this blog anonymous in the first place. By far the most popular posts on this blog are the ones I thought no one else would care about, and I worried about publishing them because they felt super private, but I did it. Every single time, the response was huge, with people thanking me for sharing because they could relate. So I want to be open and share.

But I am also aware of the world we live in. This is the world where I could get harassed for being on government benefits, put down for eating gluten-free, and generally maligned for being ill.

One day, a friend at my chronic pain support group came up to me and told me she liked my blog. I was confused. It turns out, she had read this site and recognized that it was me. I felt exposed. But this would be different. I would go into it openly, knowingly.

I will share a lot in my story. I will be open about many things. But as I read those words again this morning, I had to ask myself, just how open do I want to be? Because once it’s out there, in a book, there’s no taking it back. And while I want to use my situation to help others, there’s a line. I just wish I knew where it was.

Have any of you had to deal with this decision of how much to make public on a larger scale? How do you decide? Please comment below, because I’d love to know! And if you’ve had to deal with this decision (and I’m sure you have, because we all have!) I would love to hear about that too. How do you decide?


Gluten free dish soap? I’d love your advice!

August 1, 2018

I feel stuck, and Google hasn’t helped at all. It feels like every day, I find some new non-food thing that needs to be gluten-free. Or I need to check a new purchase of something that I used in the past, because just because something is gluten-free once doesn’t mean that it will be again. My current challenge: dish soap.

Two weeks ago I went on a search for gluten-free lipstick and found a bunch of brands that will be safe (though I still haven’t chosen which colors to get – that’s the harder part!) Last week I found gluten-free hand sanitizer after only a few attempts. But now I’m trying to figure out dish soap.

I want to get Dawn dish soap, but when I called the company, they couldn’t make any guarantees. They don’t add any gluten ingredients, but they can’t guarantee that the raw ingredients they get from other manufacturers are gluten-free. So it might be safe, but we can’t be sure.

But then I started thinking, does it matter? Wouldn’t it just be tiniest trace amounts? And I wash it off the dishes before I eat from them anyway, right? And when I eat gluten-free dishes at restaurants, I don’t check that they use gluten-free dish soap. Ditto for when my mom cooks for me. And I’m fine with those. So maybe it isn’t an issue?

I just don’t know, and I don’t know who to ask. I don’t have a medical professional I can turn to. So I’m asking you, dear readers, for your experiences. Some of you might say it matters and some might say it doesn’t, but either way, I’d love to know what you think. Please share in the comments: if you have Celiac or non-Celiac gluten sensitivity (NCGS), do you get gluten-free dish soap? Do you think it matters?


Shining a light on disability-related injustices

June 21, 2018

Yesterday I spoke to a reporter about health-related stuff. This isn’t the first time, and I’m pretty sure it won’t be the last. I’m also sure it won’t be the last time I bring a new (to them) subject to a reporter’s attention.

Speaking to a reporter used to feel like a big, once-in-a-lifetime kind of thing. Not anymore. As I have become more vocal about health- and disability-related issues, mostly on Facebook, friends and friends of friends have connected me with reporters they know who are writing on these topics.

I answer their questions the best that I can. When they plan to use my full name, I’m extra careful. I was clear yesterday that the article – which based on her questions seems to be about the “opioid crisis,” insurance coverage of alternative treatments, and new medications that are about to come on the market – would not be complete without also discussing medical marijuana. I was just as clear that I would not be willing to talk about medical marijuana if she used my full name, but that I would be glad to discuss it in detail without my full name. That’s my comfort level. For other people it’s different.

Still, I told her what I could because I think it’s important that the patient perspective is included. Too often in these discussions we hear from politicians more than anyone else. Sometimes they talk to doctors. But what about the people who are supposed to be benefiting from these medications?

Now here is where it starts to get a bit interesting. You see, we all have superpowers, and my superpower is getting people to open up to me. It happens without me even trying. I guess I inherited this from my great-grandmother. Apparently she would sit next to a stranger on the subway, and by the time she got off the train she knew their entire life story. My grandmother was the same way. So is my mother. I think people are happy to talk to anyone who will earnestly listen and care, which we do.

I also have an insatiable desire for knowledge. I read a lot. I talk to people to learn things. I reach out to others both to learn and because I care about them. And I’m generally sociable. Add that up, and I know a lot of random shit. Including about health and disability issues that don’t directly affect me.

That’s why when the reporter asked me my feelings about new medications containing cannabinoids (active constituents in marijuana), I not only told her my own feelings, but I was able to tell her about the controversy around these new cannabinoid-containing medications to treat children with epileptic seizures. I’m not in that community, and I made it clear she should talk to those folks to get a full, accurate picture. (My understanding is there’s a lot of concern that once these medications are available, they will no longer be able to get medical marijuana for their kids, and if the medications aren’t as effective as medical marijuana – they don’t have to be as effective to be FDA-approved – then they won’t have any good options for their children.) I also offered to connect her to them.

Over the course of our conversation, I told the reporter a bunch of things like this. Like when she asked my views about the problem of primary care physicians prescribing opioids in a one-size-fits-all manner without customizing things to each patient, I corrected her very strongly. I hear that bullshit a lot but, like I told the reporter, I have only ever heard it from politicians. It makes for a good headline, a good soundbite. But I have NEVER experienced that. Neither have my friends. Or the folks who comment on my blog. Or the people in my chronic pain support group. Or the people in the various Facebook groups I’m in. She was surprised and asked a lot of questions about this.

I felt good about correcting these misconceptions. It’s important to correct them for everyone, but especially for a reporter writing an article on this topic in a major newspaper (I won’t mention which newspaper, as part of protecting my anonymity on this blog.)

Now here’s where it gets even more interesting! At the very end, as we were about to say goodbye, I had an epiphany. After writing this post a couple weeks ago, I was able to speak to 2 different lawyers about the SSDI case review. And after we finished, one of them told me some interesting things. This is part of that superpower I mentioned – people just tell me things. And yesterday, I told the reporter.

I told her how the lawyer told me that she (the lawyer) has seen more SSDI case reviews in the last 6 months than in the past several years combined. The reporter sounded shocked. She asked a lot of followup questions.

I also told the reporter that the lawyer told me the number of case denials has increased a lot in the past year. Of course, before mentioning that I first explained how horribly high the denial rate had been before, and the impact it has on many people. Again, she sounded surprised. She asked followup questions. Including, did I think it was related to this current administration. I was clear that while my opinion was yes, that was only my opinion. I hope it’s enough, though, to cause her to dig into this. Because it is shameful that the safety nets we are supposed to rely on aren’t there for us. That’s why I also pointed out that SNAP (food stamps) allotments have gone down while the Section 8 waitlist has gone way up.

It’s possible this conversation will be forgotten in a pile of other upcoming articles the reporter needs to write. Or maybe her editor won’t be interested. Or maybe, just maybe, the reporter and her editor will see the huge impact of these new SSDI case review rates and denial rates, and they will also notice that no one else has been writing about this, so they could scoop the other newspapers. Maybe they will do some research and write it up and bring awareness to their readers that this is happening. And remember how I said this is a major newspaper? Well it’s big enough that if they report on this, all of the others will jump on the bandwagon. And then we might be able to build enough momentum to get the government to stop this fucking bullshit and treat us with the respect and dignity we deserve, by giving us the benefits we already paid for.

Or maybe none of that will happen. But I am trying, and it feels good to try.

Do you guys know of other “hidden” issues like this that we need to shine a light on? Please mention them in the comments or email me at msrants@gmail.com. I’ll do what little I can to publicize these things so they aren’t hidden any more, and I encourage you to do the same!


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