Labels: the bisexual-chronic illness connection

January 13, 2016

Society likes labels. It likes to put us into boxes. Sometimes those boxes overlap like a rectangular Venn diagram. Sometimes they’re similar to someone else’s array of boxes.

A lot of us have complicated relationships with our labels, and I think a lot of that has to 1-13-2016 4-32-57 PMdo with where the labels come from. I was working on a project recently where someone asked, “I have ____. Does that count as a chronic illness?” I was horrified. Why should anyone else define your condition? If you feel you have a chronic illness, isn’t that enough? And yet, I have seen it happen over and over again. Someone is told they don’t really “belong” in a group.

But labels can also be empowering. They can help us quickly convey something about ourselves to others. They can help us learn about the group that we belong to. And one of the things I find most important: they help us find community.

You’re a queer bisexual woman with a chronic illness too!?! Awesome!!

Yes, I’ve heard myself utter those words. It’s so great to talk to someone I can relate to in multiple ways. I love using certain labels because it helps me find my peeps. Totally cool.

What’s not so cool is when other people choose to label me or anyone else. It’s also not cool when they choose to redefine my labels. I’ve heard people say, “Bisexuals are only interested in threesomes.” When I say that’s not true, they disagree. Um, wouldn’t I, as a bisexual, know that better than you, a monosexual?

I’ve heard people say that if you’re not in a wheelchair then you don’t need to use a ramp. When I try to explain why that’s not true, they don’t want to hear it. They’d rather hold on to their preconceived notions than actually learn they might not be 100% correct about something.

It can be infuriating, that’s for sure. And as someone who has a chronic illness and is bi, I’ve been amazed at how much overlap I have seen in these two communities. Both chronic illnesses and bisexuality are often (though not always) invisible to the casual observer. Often, people pretend we don’t exist, either individually (“you’re dating a man so you must be straight now”) or as a group (“there’s no such thing as fibromyalgia, it’s just a made up condition so the pharmaceutical companies can sell more drugs.”)

People like to throw their labels onto us. As if I don’t know if I have chronic illnesses or not. As if I shouldn’t be allowed to define my own sexual orientation.

We both have our labels misunderstood often. Who hasn’t heard some version of “it’s not like that will kill you” when it really could, or “bisexuals aren’t capable of monogamy because when you’re with someone of one gender you’ll always be missing the other gender”? (This last one has the added bonus of marginalizing anyone who doesn’t fit into the gender binary.)

And let’s not forget the joy of having someone condescendingly explain who we are to us. I won’t even bother with a sample quote because it’s just so heinous.

There’s discrimination, and sometimes it’s based on labels that don’t apply to us but that someone assumes describe us.

Then there’s the joy of having someone argue that the label we choose isn’t “right” in some way. Like being told your condition isn’t really a chronic illness. Or the ever-popular, “I don’t think you’re really bisexual, you’re pansexual.”

But wait! Don’t despair! Because having these labels is also truly awesome!

If I didn’t use the term “chronic illness” how would I have found all of you? We all have such different diagnoses, symptoms, and life situations. I could write a blog about having Hashimoto’s Disease, but I wouldn’t get to talk about Celiac. I could write about Celiac, but what about PCOS? Anyone with a different diagnoses probably wouldn’t bother to read or comment. Using “chronic illness” allows us to all connect, and that’s magical.

I feel the same way about calling myself bi. Sure, it means that sometimes I’m shunned in lesbian spaces. But it also helps me to find other bi folks. It means people don’t look at me askance when I mention that cute girl over there, even though they knew I was dating a guy last year. We can share stories and music and movies and books. We can simply find each other.

And don’t forget the research. The health research around chronic illnesses is probably somewhat familiar to you. But did you know about Bisexual Health Awareness Month? The research around health disparities for bisexual folks is super important, but how could anyone conduct that research unless people self-labeled as bi?

I could go on for days about the similarities in the way labels affect both the CI and bi communities so for now I’ll just say, thank goodness for our labels. Despite all of the problems with them, they’ve help me to find some incredible people, and I’m so grateful for that.

Now, it’s time to go fight some more of those damn stereotypes!

How do you feel about labels? What are some of the labels you apply to yourself? I’d love to hear from you in the comments!


Major money success: I didn’t lose money this year!

January 11, 2016

I’ve played with the numbers from every angle, and I’m still not sure how this happened. This truth is that it almost didn’t.

Let’s face it, SSDI (Social Security Disability Insurance) doesn’t pay a IMG_20160111_110023.jpgwhole lot, especially when you didn’t contribute for very long and you never earned a big salary. Especially when you live in an expensive city with high rents. SNAP (food stamps) almost covers my groceries each month. Almost. Fuel assistance helps with the utilities, but doesn’t cover them completely. Health insurance (after I pay the premiums) covers most of my costs, but I still spend a whole lot more. I am so grateful for all of these, but after I added them all up, I was still far short of what I needed.

After all, I still have to pay for those health costs and utilities, car expenses including insurance, household stuff like dish soap and toilet paper, and so much more. I spend very little on luxuries like gifts, clothes, or a meal out with friends, but there’s still the occasional purchase.

I’m super lucky. Last year my parents bought me a new laptop. Back while I was still working I bought a super warm coat and a low-end-but-nice sofa. I have savings from back when I worked. But those savings aren’t enough for the next several decades so I want to avoid touching them if I can.

I’ve been watching my bank balances. Down and up, up and down. I did some consulting work when I could. I sold random stuff I had around the house that I didn’t need or want anymore. I sold some of my knitting. I did a bit more consulting. Some months looked really good. Others looked terrible. I hated the uncertainty.

Back in the days when I worked, I had a steady paycheck. Those days are gone. I want to work now, but that income would still be unpredictable. And right now, it’s completely ad hoc. Still, when I looked at the numbers (yes, I’m a numbers geek) in December, I could tell I was close. Was it possible? Could I actually BREAK EVEN this year?

I was nervous when I went over my 2015 accounts the other day. I blinked. That couldn’t be right. I went over it all again. It was true. I came out ahead! Yipee!!

I’m very lucky. I know not everyone can do this. I know I couldn’t do it last year or the year before or the year before that. But it I did this year, and I’m grateful for that.

So how did this happen? Well, I had several consulting clients. I did some work that I didn’t particularly enjoy, but I did it for the money. This including knitting some things I didn’t enjoy knitting, helping someone set up a WordPress blog (I really hate doing the back-end work, but others do too, so they’ll pay for it,) and listing things on ebay, amazon, and craigslist (I hate dealing with that shit) that I’d have happily given away if I didn’t need the money. I did some other work that I did enjoy, like knitting awesome projects and consulting on things I enjoy. But it was all worth it.

Of course, that alone didn’t do it. This is where the luck comes in.

First, I had savings from back when I worked. I had invested those savings. And those investments earned interest and dividends. Now, this wasn’t a huge amount of money. And it’s not money I’ll spend yet – all that interest gets immediately reinvested. Still, it helped me get a lot closer to breaking even.

With all of the benefits, the work I did, and the investments, I was so close to breaking even. This is where more luck comes in. My parents gave me a large birthday check earlier in the year. Then they gave me a large Chanukah check last month. And those put me over the top. Thanks Mom and Dad!

And let’s be honest, being able to work at all feels pretty damn lucky right about now. Sure, I did a lot of research and put in a ton of effort to improve my health to this point. But we all know that sometimes all of that effort and research doesn’t help. I’m glad that this time it did.

So benefits + work + investment income + gifts = coming out ahead! Without any one of those, I wouldn’t have made it.

There are no guarantees in life. I have no idea if I’ll break even in 2016. I’m going to try to start a business and maybe it will work and maybe it won’t. What I do know is that I somehow made the money work out in 2015.

For that I’m grateful.


Should I try to do more?

December 28, 2015

There’s no guide. Not only do we have to decide for ourselves what’s “right” but the only way to figure it out is by trial and error. And who wants to risk the error part?

Friends have been pressuring me to visit them more. Part of me feels like I should be able to do it. But then other parts of me think it would be a very bad idea. But maybe I should try anyway? I used to fly 3-5 times each year. Now my last flight was 5 years ago. It’s time. But is it?

I’ve done a lot these last few days. Today is my day to rest. But I look at my “to do” list and there’s so much that I need to get done. So maybe I should get groceries today. Or maybe that’s too much. But I’ve been doing better lately, so I should try to do more. Or maybe that’s too much and I’ll regret it.

I know from experience:

  • If I don’t do enough, my abilities will atrophy, and I’ll feel capable of doing less.
  • If I do too much, I’ll feel horrible, it will take me days or weeks to recover physically and longer to recover emotionally.
  • Either way, I won’t know if it’s too much or too little until later, after it’s too late to change anything.
  • The doctors can’t help me with this. It’s up to me to decide.

Crappy options, right? There’s a sweet spot, an amount that’s just right. I’m looking for that, but I have no idea how to find it.

I think about how much more I used to do before I got sicker 4 years ago. I worked full time, traveled, did errands, went out with friends. I think about how much less I did 3 years ago when I socialized very little and didn’t leave the house more than 2 days in a row, if that. I think about what my friends with chronic illness can do. I think about what they can’t do. And I still don’t know what I should be doing.

I wish this was a conundrum I faced every few years, but it’s not. It’s constant. Every few months this seems to come up. I’m super aware of it now. I feel horrible in the hot summer months, so I spent that time at home, resting, trying to get by. Then I had an accident and there went autumn. Now the new year is approaching and I am just beginning to walk around again after 6 months of reduced activity.

I need to do more. I’m in recovery from surgery, so I’m supposed to walk more and get back to where I was before. But where was I “before”? I honestly don’t remember. Am I aiming for where I was at right before the accident? That was summer, and I usually do less in the summer. Should I am for my typical winter activity level? Should I push to do as much as I can? But I know that’s a bad idea – doing as much as I can in the short term will mean burnout in the long term.

Maybe going grocery shopping today is doing too much. Or maybe staying home today is doing too little. There’s no magic answer, no one to tell me what’s right, no official guidelines. I just have to guess.

For now I’m going slowly. I’m telling my friends I won’t be getting on a plane yet. But I wonder, maybe this is the year that I finally will? Or is that too much?

How do you figure out what you can and can’t do when the boundaries keep changing? Please share in the comments. Maybe one of your tips will help me and others!


Choose either/or this holiday season and always

December 18, 2015

How many items are on your To Do list? How many events are you supposed to attend? Personally, I’m supposed to be at a holiday party at this very moment. I wanted to go. I really did. But it was just too much and there are other things I want to do this weekend, so I had to choose either the party or something else. I chose the something else.

We all have to choose. There’s only so much we can do before our bodies rebel and we know it. Unfortunately, not everyone else knows it. So I suggest you give them a choice.

Tell them to choose either this or that.

Your family wants you to go to 2 parties next weekend. Tell them you’ll gladly go to one and they can choose which one.

Or they want to decorate the tree and go present shopping and take a walk through the snowy woods. Tell them you’d love to do any one of those, and they can choose which one.

Every time there’s a list of things you’re expected to do, tell others they can choose. Of course, you might have to rule out a few options altogether. Keep it manageable. But tell them to choose.

This does a few things. First, it means that you won’t be overwhelmed by trying to do too much.

Also, it shows your loved ones that you truly want to participate. Maybe you can’t do as much as they can, but it shows that your desire is there, and that when you miss out on something, it’s not by choice.

Third, it makes your limitations clear. It shows everyone what you can and can’t do. Since we so often hide how we really feel, this is a good way to let your limitations be seen.

And finally, and so importantly, it gives your loved ones a feeling of control. You probably already know how out of control you feel by the unpredictability and difficulty of your chronic illness(es), but it’s easy to forget that our loved ones feel the same way. They want to make us feel better and, lacking that, they just want to have a little bit of control in a chaotic situation. So give them that. It will help ease a bit of their frustration if they know you’ll be doing what’s most important to them.

Finally, give yourself the same rule: either/or. Make a list of the many things you want to do and tell yourself that you’ll do either one or another, but not all of them. Be realistic. Then feel good about whatever it is that you do. Because that’s an accomplishment to be proud of.