My fertility isn’t your business

April 29, 2016

Why do people keep trying to convince me that I’m able to have kids?

Ok, I know the answer. It has to do with them wanting to give me hope, them not wanting to see someone give up on something wanted, them not wanting to admit that they might also fail to have the children they want… them them them. It’s not about me.

But it still bothers me.

When I was in my late 20s I decided that I didn’t want to pass on these genes. I had an entirely unhelpful diagnosis of Undifferentiated Connective Tissue Disease. That roughly translates to some-sort-of-connective-tissue-disease-but-we-don’t-know-what-or-how-to-treat-it. I was looking at 60 years of pain ahead of me and I wasn’t happy about it. No, I couldn’t pass that on to my kids.

But even as I said it, I still hoped I’d somehow have kids. I might adopt. I might marry someone with kids. Maybe I’d marry a woman who wanted to get pregnant. But it still hurt that I’d never be pregnant myself. I’d always wanted kids.

When we had room for an elective in high school, my friends took art and drama. I took a child development class. I started babysitting at 12 and continued to babysit regularly for many years. I was a camp counselor for 6 summers. I always loved kids and always assumed I’d have some of my own. And I didn’t just assume it because that’s the societal expectation (though I’m sure that was part of it,) but because I really wanted kids. The question wasn’t if. It was simply how many and with whom?

So this was a major change in thinking, and it really didn’t help to have people constantly suggesting that I should still have kids. They’d tell me that there was no guarantee my kids would have what I had (and they’d conveniently forget there was no guarantee my kids wouldn’t have it!) They’d say someone might find a cure. Right.

As I moved into my 30s, that conversation stayed about the same, it just became less frequent. My friends knew where I stood, so there was no point in talking about it. No one else brought it up.

But in the last couple of years, something shifted. It’s probably my age. Now that I’m at the do-or-die stage (so to speak) people are asking if I plan to have kids, because if I don’t have them soon, I never will. Ok, I get that. And I don’t really mind that question. What I mind is that they don’t accept my answer!

If I say no, they ask why not. I sometimes say I’m too old, because that’s a convenient answer. But it doesn’t work. I then hear about how their sister’s friend’s coworker had a baby at my age. I point out that their sister’s friend’s coworker was probably married at my age. And already trying to get pregnant. And ready to have kids. And she probably carried the baby for around 9 months before that. I see them look surprised as they do the math. Yeah.

The truth is, I’m single, and I have no intention of having kids alone. I also never wanted to be an older mom. There’s nothing wrong with it, but it’s not for me. I don’t want to be 60 when my kids go off to college. I don’t want to pass along these genes, but that doesn’t bother me as much as it used to now that I have some diagnoses and some treatments that would have worked great if they’d been used 15 years earlier. But I’m still in my late 30s and I’m single, and that’s a problem. Plus I have fertility issues that – funny thing – I don’t go around telling everyone. So even if I can get pregnant, and we don’t know if I can, there’s a good chance it would take a few years.

I think it’s time for some math. Let’s say I meet the love of my life tomorrow. Unlikely, but let’s pretend. We date for a year and then get engaged. I don’t care about a big wedding and let’s say they don’t either, so we’re married 6 months later. Then we start trying to get pregnant immediately. It takes at least 2-3 years to get pregnant. Then 9 months of carrying the baby. We we’re talking around 4.5 years from now. By then I’d be in my 40s. That’s a hard time to get pregnant even for someone who’s healthy!

And that’s if we don’t consider the other reason I can’t see having kids: my symptoms. I can barely take care of myself right now. I struggled to take care of a dog. How the fuck would I take care of a baby?!? Or a young child?!? I’m exhausted after an afternoon with my nephew. I visit my friend and her family for 3 days, she does all the cooking, I stay home half the time she takes the kids out, and it’s still more than I can handle. I couldn’t do that every day without doing real harm to my body. Other people do it. Plenty of you are parents. And I applaud you! But I don’t see myself handling that well right now. And it would break my heart to not be able to pick up my child. But that would be the reality.

And then of course there’s the pregnancy itself. My hormones, my joints…. I don’t see them faring well.

And as if that’s not enough, there’s the part where I honestly don’t know if I’ll ever find someone I want to marry, much less make that happen this year. But see the math above – this year would already be too late for me.

These are all very legitimate reasons to assume that I won’t be having kids. But why should I tell strangers and acquaintances all of this? Why isn’t it enough for me to say no, I won’t be having kids unless I marry someone who already has kids? Why can’t people just believe me and move on?

Probably for the same reason they can’t let it go when I say, “I’ll never be cured.” But that’s a subject for another day.

What about you? Do you deal with this? How do you handle it? What do you say? Please comment and let me know!


The strangeness of “I could never do that”

April 13, 2016

Me: I don’t eat gluten.
Them: I could never give up gluten.IMG_20160413_173002

Me: I can’t jog or do any exercise.
Them: I could never stop exercising.

I hear this response over and over. The “I could never….” response. And over and over I have the same response: you really don’t get it.

Let’s take gluten as an example. When I say I can’t eat gluten, even though the other person knows it’s for health reasons, they’ll say, “I could never give that up.” What do they mean? It’s not as if I gave up gluten on a whim. No one offered me a cure for Celiac and I said, “Thanks, but no thanks.” I wasn’t asked, would you like to give up gluten just for the hell of it?” No, this is necessary for me to live.

So when someone says, “I could never give them up,” what I hear is, “I would rather die.” Because that’s the other option. Give up gluten or die. No, death wouldn’t come immediately, but it would come eventually. And in the meantime there would be a lot of horrible nausea, pain, and other symptoms.

When someone says, “I could never do that” they probably mean that they’re impressed that I can do it. As if I have a choice. They probably mean it in a nice way. But it doesn’t feel that way. Because the other thing I hear is, “I love this thing so much, I can’t imagine living without it, but you can’t have it.” Again, I know they don’t mean it that way, but that’s how I hear it. They get it and I don’t.

Exercise is the same thing. When someone says, “I could never give up skiing/jogging/dancing/kickboxing/some-other-form-of-physical-exertion” what I hear is, “I would rather die” or “I love this thing so much that my life wouldn’t be complete without it, so your life must really be lacking.” I’m sure they don’t mean to convey that message, even though I do get the feeling they’re privately thinking it. Because what else could they mean? When I say, I can’t do that, and I really can’t, even though I want to, but my body won’t let me, then they know I have no choice. Responding that they could never give it up just shows me how important it is to them.

What if I was in a wheelchair? Some days I have been. More days I will be. So far, no one has said, “I can’t imagine not being able to walk.” But I’m pretty sure they will. Because to them, life can’t be complete without the ability to walk. Yet I’m also pretty sure that if I told them they had to choose between using a wheelchair and death, they’d choose the wheelchair.

I keep offering death as the alternative because as far as I can tell, there is no other. It’s not like I can find some other alternative through “trying harder” or some miracle cure that I’ve simply chosen to not take. This is my reality.

Every time we’d talk about my grandmother’s advancing age, she’d always say, “It sure beats the alternative!” Then she’d blow out the candles on her birthday cake. She said that every year until she passed away at the age of 94.

So from now on, when someone says, “I could never….” to something that I have no choice about, I’m going to say, “It sure beats the alternative!” and then give them a moment to figure out what I mean. I think that might shut them up.

Because even if they don’t mean it to, it hurts.

What has your experience been with “I could never….”? Do people say it to you? How does it make you feel? How do you respond? Please comment below.

How dare they!

March 8, 2016

Last year I got a surprising letter in the mail: I was coming up on the waiting list for Section 8! Section 8 is a housing program where the tenant pays up to 30% of their income in rent and the government pays the rest. This is huge!

Now, it’s not all great. Section 8 has strict rent limits that are very hard to meet. For example, in my town the rent would need to be no more than $1187 per month, including all utilities. I haven’t heard of a 1-bedroom apartment for so little in many years. Still, I figured it would be worth trying.

The waiting list for Section 8 can be 3-4 years. I’ve only been on the list for 2 years! Wow! So now it’s time to prepare, right? They need a lot of paperwork. Of course. I handed it all over.

Now, if you’ve ever applied for benefits in the U.S., you know how intrusive it can be. They want to know how much your income is. They want to know your spending on every little thing. They want your social security card, driver’s license, bank statements, copies of approval letters for all other benefits (because heaven forbid the agencies actually speak to each other!) and all sorts of other things. But I do it, because that’s how I’m sort of paying the bills right now.

I really hate handing over bank statements. There’s something about that which feels particularly intrusive and unnerving. But I did it. 12 months of bank statements. It took ages to print out all of the statements and white out the account numbers. Still, they showed which bank was mine, how much money I had, what I deposited, what I paid out, my name and address, etc.

And they lost them.

Yesterday I got a letter in the mail saying they needed my bank statements. I contacted the woman in charge of my case and she said she didn’t have them. I had her look again. She still didn’t have them.

What the fuck!?! They lost my bank statements for all of 2015!!

And now they want another copy. I know they want that copy before they’ll give me benefits, but is it worth it? Because honestly, I don’t know that it is. I’m not sure I’ll be able to use Section 8 anyway. And what if they lose them again? I was so unnerved that I didn’t even want to mail those statements, so I hand delivered them to the office. I really couldn’t have done more.

I’m not sure what I’ll do, but I know I’m pissed. And I’m going to let them know that. Because this is COMPLETELY UNACCEPTABLE!

Yes, I’m one of them

December 9, 2015

I was talking to some friends about some tough decisions I need to make about benefits. One of them said, more than once, that I might need them for a while, but those benefits aren’t meant for my “demographic.” They’re not for people like me. But the thing is, they really are.

I understand why she said it. We both grew up in middle class families in the same middle class neighborhood. We both went to college, then graduate school. We both got middle class jobs. We followed all the “rules” and now we’re supposed to have our happy middle class lifestyles. She is a stay at home mom. Her husband earns a very large salary. She has that middle class lifestyle.

I don’t.

There’s an idea that benefits are meant for other people. The people who aren’t middle class. The people who don’t have jobs. Well, as it turns out, that’s me.

Those benefits are for people with physical and mental illness. People who can’t work. Yup, me again.

People think they’re for people who are older. But they aren’t. They’re for people of all ages. Including people in their 30s like me.

My friend means well. She tries to understand. She is one of the only people in my life who knew me before I was sick, and she understands my health problems better than most. But she can’t accept that it’s permanent because she doesn’t want to. It hurts her to think of me in pain. I get that. I feel the same when someone close to me is in pain; I pretend it can’t be serious or permanent, even when it obviously is. That’s how she feels about me.

But it doesn’t change things.

So yes, I’m one of those people. The other ones. The ones who aren’t us. Except sometimes they are. Sometimes they’re one of us. Sometimes we’re one of them. It doesn’t matter if you grew up rich or poor or somewhere in between, whether you got advanced degrees or didn’t finish high school, you can be too sick to work. And when that happens, benefits like food stamps, Medicaid, and section 8 are helpful. Even when we don’t want them, we need them.

Like it or not, we’re one of them.

You can choose to say no, but I can’t choose to say yes

October 22, 2015

“I have to do this and this and this and this and then there’s that trip tomorrow…. I mean, it’s fun, but it’s still a lot, you know?”

All I could do was nod my head. What could I say? I remember what it was like to be so busy and feel like I couldn’t keep up, but my friend was talking about how he was so busy, that tomorrow’s day trip would be overwhelming. The day trip that he and other friends of ours take every year. The day trip that I want to go on every year. The day trip that I miss every year because of my health problems. The day trip that he could say no to, but chose not to.

That was the hard part for me. I just kept thinking, “You could always say no.” I remember being in that place, and feeling like I couldn’t say no to things. Now I see what a luxury it is to have the choice! Because even when it’s something you really want to do, you can always say no. But you can’t always say yes. At least, I can’t always say yes.

There’s a certain perspective you gain when your body is constantly stopping you from doing things you want to do, things that your peers can do effortlessly. I wish I could explain it to my friends. I see things so differently now. It’s not necessarily better, and the cause for it totally sucks, but it’s different.

It’s easy to say what I would do in the same situation, but the truth is, there’s no way to know. Maybe it’s be just as over-committed as everyone else seems to be. All I know is that right now, I sure wish I had the luxury of choosing to say yes to invitations. I just hope everyone else remembers they have the option of saying no.

Cutting out the people who don’t care

October 13, 2015

Her: I’d like to invite you to our house for Thanksgiving.

Me: You’ve probably heard that I might need surgery, so I can’t plan anything until that’s figured out.

Her: I’m sorry to hear about the surgery. I had no idea. Just let me know if you’ll be able to make it or not.

On its face, this seemed ok. She was sorry to hear about the surgery. So that was a good response, right? But I felt like something was missing. It nagged at me. I read the message again. Something still nagged at me, but I didn’t know what.

Hours later, it hit me: she didn’t ask why I needed surgery, if it was a big deal, or anything else!

I’ve been one of the lucky ones. Most of my family and friends have been incredibly supportive. A lot of people lose many of their loved ones when they have a chronic illness. It’s an unfortunate side effect that the doctors don’t tell us about. It’s hard and it hurts and it sucks. But it happens.

For me, it was my sister. I’m sure our problems aren’t all because of my health, but they’re a big part of it. Every now and then, I question if things area really that bad. Maybe I should try to make amends? Maybe she really does care? And then something like this happens.

Apparently our parents hadn’t mentioned my possible surgery to her. I guess there wasn’t anything to mention yet. I was pretty sure I’d need surgery, but I hadn’t gotten the MRI results yet (which is why I haven’t mentioned it to you yet – don’t worry, I’ll tell you all about it when it’s official.) Now, if someone I cared about had said, “As you probably know, I might need surgery,” I’d be upset and worried! I’d ask why, when, if I could do anything to help, etc. Actually, that’s how the few friends I told have responded. They’ve been amazing. They’ve been calling and texting and emailing. They’ve asked questions and offered support. Not my sister. Nope. She didn’t even ask why I would need surgery.

It’s hard to accept that sometimes a relationship can’t be salvaged. It’s natural to want to keep people in our lives. It’s especially hard when that relationship isn’t a vague acquaintance or a coworker, but a close friend or a sibling. We don’t have any other siblings. We only have each other. But that doesn’t matter. That’s not enough of a reason to try to be close to someone who obviously doesn’t care about me, or who at the very least tries to distance herself from me.

I know from past experience that I am better off focusing on the positive relationships in my life. So I will go to Thanksgiving dinner to be with other relatives (depending on how I’m feeling,) but until that day, I will put my limited energy into relationships with the people who love me and care about me.

Now if you’ll excuse me, I need to answer some more of my friends’ emails. They’re worried about me.

“Have you tried…..?”

September 28, 2015

We’ve all heard it. A well-meaning friend, a nosy stranger, a nervous relative, a new acquaintance hears about your health problem and asks, “Have you tried X?”

The first time you hear it, you probably think it’s nice they’re trying to help. Maybe they even suggest something you’ve never thought of. The 5th time you hear it, it’s a bit annoying, but at least they want to help, right? The 782nd time you hear it, you’re fed up and trying not to yell at them about their ignorance.

But how do you really respond?

A friend and I were sharing stories about this yesterday. She said how she always wants to say, “Do you really think you’ll suggest anything I haven’t already thought of?” and I said that I do actually say that. She was shocked that I say it. I was shocked that she doesn’t say it.

The thing is, why bother pretending? I’m not mean about it, but I do point out that I’ve had my health issues for more than 20 years. I read the news. I follow health blogs, Facebook groups, and twitter accounts. I read library books and newsletters. I talk to friends with similar health problems. And let’s not forget, I just happen to see many doctors. So do they really think they’re going to suggest anything that I haven’t already thought of or had suggested to me by a professional? I point all that out, nicely, and no one is offended but they do stop offering me advice. Win!

What about you? How do you handle it when someone asks, “Have you tried….?” Please share your approach in the comments. I’d love to know what everyone else does!

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