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.

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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!


My wheelchair does not give you permission to touch me

June 13, 2018

Last weekend I marched in Boston’s Pride Parade and it was wonderful! I had a fantastic time. But it wasn’t all perfect.

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There were a few things that bothered me about being in a wheelchair, and a big one was people touching me without permission.

It works the way many other parades do: we marched, and people on both sides of the street watched us. Some waved, some cheered, some yelled, some smiled excited smiles. And some high fived the folks passing them.

I didn’t want to high-five people. There were several reasons. One is germs. It would be hours before I could wash my hands. Also, gluten. I wanted to eat the sliced apple I brought with me. With my hands. I couldn’t contaminate them with the gluten that was probably on strangers’ hands. Also, I didn’t want to eat an apple after high fiving dozens of strangers because ew. Germs again. And then there was the pain. It hurts to high five 1 or 2 people, never mind dozens.

I love to wave at folks as we walk in the parade, but I quickly learned that people used that opportunity to give me a high five, so I had to stop waving. That was sad. I picked it up again in areas where the crowds were behind barriers, but most of the streets had the crowds practically on top of us. As we went by, I tried to keep my hand in my lap. (My other hand was already holding the large 45-foot flag that our group was carrying.) Sometimes I would say, “I’ll pass” or something similar. Often that was good enough. But not always.

Too many times, the person would then touch me. They would touch my shoulder or my arm. One touched the bag in my lap. It was weird and awkward and gross.

It could have been worse. Luckily, I wasn’t in so much pain that even a tiny touch was excruciating. But I could have been. Thankfully I’m not generally adverse to touch, but I could have been.

I love Pride. I yelled “Happy Pride!” to so many people in the crowd that my voice was a bit hoarse by the end. I adore Pride. I love seeing tens of thousands of people celebrating who they are and who they love, supporting their loved ones and our community, and showing the world that who we are is not “wrong,” despite what so many people (and governments) say.

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I love Pride, but that doesn’t mean I want to be touched by strangers without permission at Pride. Or any other time.

I know I am not alone in this. So many people have similar experiences. There is something about having a visible physical difference that makes people think they have a right to your body. It’s like when strangers touch a pregnant woman’s belly without asking. WTF?! Just because you can see that someone is pregnant or in a wheelchair, doesn’t mean you “get to be part of the experience.” It doesn’t work that way.

Part of it is also that people want the “poor woman in the wheelchair” (that’s the attitude, if not the conscious acknowledgment) to be included. Here’s the thing: including me means giving me control over my own body. It means accepting my wishes for my body. Touching me without permission is not including me. It is disrespectful and gross. You don’t do that to others, so don’t do it to me.

At the end of the day, one of the women who had pushed my wheelchair for part of the parade told me that she felt bad for me. She saw what was happening but didn’t know what she could do. No one high fived her, because she didn’t have a free hand – they were both on the wheelchair. Yet, strangers didn’t touch her. Think about that for a second.

Many people looked awkward in the moment. Their hand was up, and they had to do something so instead of putting it down or high fiving another person, they touched me. Did they later realize that was an odd thing to do? I hope so. At the very least, maybe they will read this (or one of the other things I have written about this incident) and think twice next time they are tempted to touch a person in a wheelchair without permission.

Because again, if you wouldn’t touch the person pushing my chair as she passed by, then you shouldn’t touch me, either.

Maybe next time we’ll talk about all of the photographers along the route who took my photo only because I was in a wheelchair. Not cool, folks.

By the way, I want to give a huge shout out to all of the awesome folks who made it possible for me to attend Pride! The local Council on Aging loaned me a wheel for free (many do, so check your town’s Council on Again if you need to borrow a wheelchair, cane, walker, commode, etc.) Several folks volunteered to push my wheelchair during the parade. At the last minute, someone volunteered to push my wheelchair around part of the festival that follows the parade (and thankfully I was able to walk and push it the rest of the time.) Someone volunteered to take the wheelchair out of my car and get it downtown with me. A stranger in the subway station helped me get the wheelchair onto the train. And stranger on the train offered to help me get the chair off the train and then put it in my car for me. I can’t lift the wheelchair into or out of my car and I can no longer walk as much as I would need to in order to march at Pride, so without these folks, I couldn’t have attended Pride. I was exhausted afterwards and spent 2 days at home recovering, but it was totally worth it. Some folks were weird, but many others were kickass, and it’s important to remember them!


Reunion surprises

November 27, 2017

As so many people do this time of year, I recently went to my high school reunion. It was WEIRD! Of course, it was weird in the obvious ways (That person knows who I am? How could that person have forgotten me? Wow, she looks OLD! I don’t even remember him.) And then there were some chronic illness-related surprises. I thought I’d share a couple of them with you today.

First, there was my own perspective, which surprised the hell out of me. For the reunion 10 years ago, life was pretty good, if you didn’t count my complete inability to get into a healthy romantic relationship. But the rest was good. I was able to go to the reunion and talk about my good life.

Five years ago I was miserable. If you scroll through the archives for this blog, you’ll see that I was NOT doing well health-wise. That had a bit emotional impact, too. I was fighting to get disability benefits. I didn’t want them, but I needed them. Unfortunately, I was deemed “too healthy” for them. Fuck that shit. I felt horrible. I was house-bound multiple days every week. I didn’t think I had the energy for a reunion, and even if I did, what would I say? I wasn’t dating anyone, I wasn’t working, and the future felt bleak. Blah. I stayed home.

This year was different all around. First, I’m feeling well enough to attend a reunion! Ok, maybe not every day, but I rested up in advance and I managed it. I’m doing some very part time work, and when someone asked what I was doing for work, I mentioned that. There was no need to say it was part time. I talked about it like it was a full time job, because why waste time on details. This many years out of school, most of my classmates are married and have kids. I was one of the only ones who was unmarried. But I was ok with that. I mentioned to someone that I was writing a book, and when he asked about the topic, I said it was about chronic illness. I didn’t bring up my health stuff otherwise, and I didn’t dwell on it, but I also didn’t hide it.

I caught up with people and had a nice time. Because you see, I went into this reunion not trying to impress anyone. I didn’t care what they thought of me. Sure, there were a few people I wanted to reconnect with, but most I didn’t even bother to talk to because I didn’t care to find out what they’d been up to. If they asked me, then I answered, but I never worried about them judging me. For one thing, I figured most of them would be more worried about others judging them than about passing judgment. But also, what do I care what a bunch of people from high school think about me now?

My own attitude was perfect. It was freeing. And it shocked the hell out of me.

But there was another surprise. Over the years, I have become Facebook friends with a lot of former classmates. Facebook is weird. We’re not friends now, we weren’t friends then, but we’re connected and seeing things about each others’ lives. Go figure.

I write about a lot of stuff on Facebook: politics, cute dogs, crochet, my small business, and of course, chronic illness. Sometimes I share funny memes. Sometimes I share poignant blog posts. Other times it’s news articles. And occasionally, I write personal essays.

So I’m at the reunion, and this guy I wasn’t really friends with in high school, though we did share a few classes, came up to me. We’re Facebook friends now, but haven’t spoken to each other since the last reunion I attended, 10 years ago. He came up to me, looked me in the eye, and said he liked my writing about chronic pain. It got to him. Then he told me about a friend who was recently diagnosed with MS.

Of all the things I expected to happen at the reunion, that wasn’t one of them. This guy I didn’t really know told me that my writing about chronic pain had an impact on him. I was touched. And very surprised.

You see, we don’t know who will be impacted when we speak honestly about our situations. There’s a lot I don’t share on Facebook – they don’t need to know that I’m on food stamps or SSDI. They don’t need to know my embarrassing stories. But what I do share, I share honestly and from the heart.

This reunion was nothing like what I would have expected. It was fun and loud and interesting. And most surprising of all, my chronic illnesses were present, but not over-powering. That’s something that I hope to continue.


Forgetting when pain was scary

November 13, 2017

A friend mentioned that it’s frightening to wake up in pain. I paused, not sure what she meant for a moment. Then I remembered back to when waking up in pain was scary. That feels so long ago.

Don’t get me wrong, sometimes it’s still scary. It’s just that that feeling has become rare. After all, when I’m in pain all day every day, why would it surprise me to be in pain at night?

My friend was referring to a different kind of pain. She is pregnant, and sometimes wakes up with horrendous leg cramps. Before the pregnancy, she only had pain the way most people do: if she injured herself. So this is unusual. And we humans often respond to the unusual with fear. It makes sense from a survival perspective. And pain is a bad thing – it’s telling us that something is wrong. So again, it’s natural to have a negative reaction to it.

The thing is, when you’re in pain all the time, your survival instinct learns that this isn’t a threat. You can’t be always worried that something is wrong because it will wear you out.

Occasionally I have a burst of scary pain in the middle of the night. Usually, it’s a new or uncommon pain, and that’s what makes it scary. More often, it’s my same old pains. At their usual levels, I sleep through the pain; I learned to do that when I was 17 years old and thoroughly exhausted from the sleepless nights.

When the pain gets worse, I often wake up, think “that sucks,” move to a less painful position (if possible,) and go right back to sleep. I’m aware of it, but I don’t think much of it. It’s not scary at all. Even when the pain is bad enough that I can’t get back to sleep for a while, I don’t feel fear. Annoyance, frustration, and sometimes anger for sure, but not fear.

It has been so long since pain itself has been scary, that I forget what it’s like. Now when pain scares me, it’s not the pain that I find frightening, but the unknown cause and the fear that it could last the rest of my life, as so many new pains have. Will this ever go away? Will it get worse? Will it stop me from doing things I love? Those are the fears. But when I know the cause and that it will end, there’s no fear. My body’s instinct has shut down when it comes to pain, and I wasn’t even aware of it happening.

It’s easy to see the many ways that non-chronically ill people don’t understand what we go through, but it’s also true that we don’t understand what they go through. I don’t want to diminish my friend’s experience simply because I am in pain more often and have learned to deal with it, because my pain comes with a bunch of other (arguably worse) symptoms, and because mine pain will never go away. Yes, I would rather be in her position, but that doesn’t make it easy for her. Her natural instincts are still intact, and possibly heightened because she is pregnant. She is dealing with changing hormones and a changing body. That doesn’t sound easy to me.

My point is simply that it’s easy to shrug off what others go through as being no big deal, but I still try hard to have sympathy and empathy for them, as much as possible. Just like I want others to have for me.

This conversation happened weeks ago, but it has stuck with me: the confusion I felt (people wake up feeling scared of pain?), the realization of how much my perspective has changed, my instinct to shrug off her situation, and the awareness that that would be a crappy thing to do. Writing this is my way of reminding myself to keep that awareness. Because everyone’s pain is a problem for them, and that’s something we can all relate to.


Going public is like coming out over and over

September 13, 2017

Once upon a time, no one knew I had health problems unless I told them. Ok, that’s not entirely true. There were signs. It’s just that most people didn’t pick up on that signs, or I could shrug them off as an injury or something. It was easy to lie.

Then I decided to write a book.* Now, when you Google my name, that book comes up. And it’s all about having chronic illnesses.

This has been such an interesting experience. It makes my journey public in a way it never was, because even though most people don’t Google my name, I know that they could. And that leads me to think and speak about my health in different ways.

Take last night, for example. I was giving a presentation in front of a group on a different topic entirely. Someone asked a question and I was answering it with a few examples. And then I mentioned medical stuff as a relevant example. There was was, in front of a small group, pointing at a screen, and looking completely healthy except for my knee braces. And I felt odd mentioning my health, but it was relevant. And I even said, “this is no secret – if you Google me, you’ll see the book I wrote on this topic.” And I saw some eyes move south to those knee braces.

It’s like coming out. I joined an online dating site a few months ago. I was taking a walk with a neighbor and she was asking me about it. We didn’t know each other well, but were friendly. She asked if I had met anyone and I said I’d met a couple interesting people. She asked about them, and as I mentioned the man, everything was normal. When I mentioned the woman, I saw her hesitate. I watched her brain churn as she processed that bit, and then we moved on. With other people, where there’s context, I might directly say that I’m bisexual. But no matter what, if the topic is going to come up, I need to come out over and over again, because whether I’m dating or single, no one will know I’m bi if I don’t mention it.

And every time, I wonder how the other person will react. Will they be accepting? Will they be jerks? Will they ask the same old tired questions?

Just like mention my health problems. Every time, it’s necessary to specify what I’m talking about. Every time, I wonder how they will react. Will they be accepting? Will they be jerks? Will they ask the same old tired questions?

Sometimes I want to wear a sign on my head, or print business cards to hand out: YES, I HAVE CHRONIC ILLNESSES AND NO, THE DETAILS ARE NOT YOUR BUSINESS. Except that now, with the book, some of the details are out there. So they could be your business. Still, it doesn’t mean I want to talk about it all the damn time.

But you see, there’s also the part we don’t usually think about: it’s freeing! Every time I start to question whether or not to mention something, I remember, it’s out there anyway, so why not talk about it? Is it ok to share this? Might as well. Is this a secret? Apparently, not any more.

Again, it’s like coming out. I don’t have to watch my pronouns anymore. I can just speak about past loves and lovers like anyone else would. Sure, I have to use my judgement for safety. Yes, some people will be jerks, but there aren’t any secrets.

That isn’t to say I don’t have limitations. I still write things on this blog, for example, that I wouldn’t say publicly. There’s definitely something to be said for having a pseudonym. Still, to be able to speak publicly and not question myself constantly is HUGE!

It also means more people in my life know about my health issues. I’m more open about it on Facebook because, after all, they see me promoting my book. There’s no question about it at all anymore.

Coming out about orientation, health, or anything else is a personal choice. This isn’t something I would have done even just a few years ago. I am so glad I have. For me, right now, this was definitely the right move. If it’s not right for you, though, that’s cool, too. You have to do what works for you.

Have you been public about your health stuff? How has that gone for you? I’d love to hear about it in the comments!

*It’s frustrating that I can’t tell you what the book is. I want to so badly, but that would defeat the purpose of having a pseudonym here.


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