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.

1 Comment | Educating, Expectations, Frustration, Healthcare, Medication, Rants | Permalink
Posted by chronicrants

When you’re not the “right” kind of poor and disabled

August 7, 2019

I just learned about a program for low income and disabled folks to get internet access for $10 per month from Comcast. Too bad I wasn’t eligible, despite meeting all of the criteria. You see, I’m not the “right” kind of disabled and poor.

I looked at the list of requirements for the program. Despite only needing to check off one box, I could check off many: I am on Medicaid, getting SNAP (food stamps), on Section 8 (a housing voucher), and in the Low Income Home Energy Assistance Program (for help paying utilities.) But I’m not eligible. Why? Because I’m not a new customer. You see, it doesn’t matter how little money you have coming in, if you aren’t new to the internet, then you aren’t eligible for this program. Comcast is the only option for internet service where I live and the least expensive plan is $79 per month. It bothers me when I pay my bills every month, especially since the service I had in my last apartment was better quality and only $45. Still, it’s the only choice for internet here, and I consider internet a necessity for as long as I can afford it. Lowering it by $65 per month (accounting for taxes and fees on the new plan) would make a huge difference, though!

I’m not the “right” kind of poor and disabled for a lot of government and other programs either, though I have managed to get quite a few accommodations, for which I am very grateful.

I am so not the “right” kind of disabled according to a lot of people out there. After all, I can mostly walk without any assistive devices, and that’s their only consideration. I mostly look healthy, especially if you don’t look too closely. That’s all that “counts,” as far as they are concerned.

But that’s not the reality. The reality is that I spent all day feeling like crap, not even managing to get dressed until 2pm, because I had to be out of the house most of the previous day for medical tests. The tests were easy, but the travel too and from, plus being alert and interactive, was just too much for me. I came home exhausted and in a ton of pain, and had to spend the next day recovering.

The reality is that I have a lot of money in the bank, and I am so grateful for that. But I also know that the only reason my totals appear to go up is because my investments have gone up. It’s not real. When the market turns, as it always does, those numbers will go way down, and I won’t have any job income to offset the fall. I am thankful for my social security payments, but they don’t cover enough.

For a minute last summer, my benefits covered all of my basic expenses, which meant if I earned a little money from dogsitting or something, I could use it to go out to eat or buy clothes, and not have to take money out of savings. I would need those savings for a bigger expense, like to replace my car or to move, but for everyday things, I was ok. And then a couple months later I lost my food stamps. I had to start taking an expensive medication that insurance didn’t cover. And once again, for basic monthly expenses, I was taking money out of savings.

My savings are my safety net, but I know they won’t last forever, especially if I have to take out money just to cover the basics. So no, I’m not really poor in the typical sense. Yes, there are people who need the help more than I do right now. On the other hand, without these benefits I receive, I would quickly run through my savings. Then I would be in a dire situation, because the benefits wouldn’t cover all of my basic expenses and I would no longer have savings to make up the difference. Then what would I do?

And that is the crux of the issue with the “right” kind of poor and disabled. By the time we meet that definition, things have deteriorated to the point where the help no longer helps the way it would have earlier on. For example, one day I will need knee replacement surgery. Right now I do physical therapy and wear knee braces in order to put off the need for the surgery. If the problem was caught sooner, I could have avoided years of pain. So now I could ignore my exercises and forget the knee braces and get the surgery right away, knowing that it will have to be repeated every decade or so. Or I can use the supports I have now and put off the surgery, in the hopes that I will only need to have it done a couple of times throughout the rest of my life. I choose the latter. But imagine if I didn’t have a choice. Imagine if my only option was to repeatedly have the surgery. That’s what these programs want. They want us to get the point where we no longer have better options, and then maybe they will help us.

I am lucky. I have the option to keep pulling money out of savings to pay for basics. These days, my basics are rent, utilities, groceries, medical expenses, gas, car insurance, and car maintenance. Everything else is an extra, including a meal out, a gift for a friend or relative, or a new sweater. I get help for some of those necessities, like rent, utilities, and groceries. Still, my benefits only go so far, and my medical expenses are high, since a lot isn’t covered by insurance. Without savings, I would be choosing which of those necessities to get rid of and frankly, I don’t see anything on that list that I’m willing to live without (the car is necessary where I live now and even before, when I lived near public transportation, I was often too sick or in too much pain to take it and would have to drive instead.)

So screw the folks who only want to help the “right” kind of poor and disabled people. We all deserve help, and these programs should be available to those who need them.

I want to add a final, important note. I doubted myself. Maybe I was being too harsh? Maybe it’s good to limit these programs to only the most needy among us? Maybe I’m being selfish? Self doubt is a big problem for a lot of people, and it comes up a lot for folks with chronic illness. Personally, I was told for years that I wasn’t “sick enough” to get help, and that ended up making me a lot sicker. If only I had been diagnosed and treated a decade earlier, I might not be disabled now. I might be able to work full time, and these money issues wouldn’t be on my radar. So yes, I still doubt my needs. And then, while I wasn’t sure if I should hit “publish” I went over to Facebook, and saw a bunch of comments on a post I had made about this program. Several folks were really excited to see it, then disappointed to learn they weren’t eligible because they already had internet through Comcast. Those who were able were already talking about switching to another provider, with the plan to switch back in three months in order to get on this program. Because yes, there are people with internet access who have health and money issues and who need the help. We need help, not gatekeeping. This is a federal program, and should be open to everyone. And that is what made me decide to publish this post after all.

What do you think? Should programs like this be available to everyone who is low income, even if they have internet access already? Are the restrictions reasonable or bullshit? Please comment below, because I would love to know what you think.

6 Comments | Expectations, Frustration, Insensitive, Rants, Support | Permalink
Posted by chronicrants