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!

4 Comments | Educating, Expectations, Frustration, Insensitive, Intrusions, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Tagged: , , , | Permalink
Posted by chronicrants

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.

17 Comments | Educating, Expectations, Frustration, Insensitive, Limitations, Rants | Permalink
Posted by chronicrants

Physical vs. cognitive: it’s all connected, sometimes

April 10, 2016

I was chatting with a few people about my chronic illness writing when one mentioned a friend with fibromyalgia who also has some cognitive issues. She asked if chronic pain and cognitive problems could be related.

Oh boy, here we go!

Someone else there with chronic pain said that it makes sense to have cognitive issues because the pain can be tiring, but she was a bit vague. I wanted to go deeper.

First, I pointed out that pain can be distracting. I asked, “If I stabbed you with a knife, how well do you think you’d complete a crossword puzzle.” I saw the wheels turning as the others processed that, imagined it. It was graphic, and it got my point across well.

Then, we mentioned how tiring it is to always be in pain. And on top of that kind of tiredness, it’s hard to sleep when you’re in pain, so there’s sleep deprivation, too. I asked how their cognitive abilities are after a few nights of bad sleep. “Now imagine that every night for decades.” Again, they slowly realized.

Finally, I explained how sometimes that thing that causes the pain and also cause cognitive impairs all on its own. In other words, the pain doesn’t cause cognitive problems, the cause of the pain causes those problems. For example, I have Hashimoto’s Disease. Hashimoto’s can have a lot of symptoms including joint pain, digestive issues, cognitive problems, low body temperature, weight gain, hair loss, and more. Notice that one of those symptoms is joint pain. Notice that another of those symptoms is cognitive impairment. Neither causes the other; they’re both caused by Hashimoto’s. Everyone nodded along.

I love that this acquaintance asked these questions and that everyone in the room made the effort to thoughtfully consider what I said. I love that they really tried to understand! Sometimes I hate talking about chronic illness because I just want to forget about it and go have a good time. But sometimes it’s so wonderful to educate people, to help them understand. And now the person who asked will have a slightly better understanding of her friend’s symptoms.

I admit, there are days when I dodge these questions, but today was a good day, so I answered, and I feel great about it. What about you? Do you ever answer these kinds of questions? Do you avoid them? Are you never asked? How do you feel about educating people? Please comment with your thoughts!

6 Comments | Educating, Fatigue, Pain, Symptoms | Tagged: , , | Permalink
Posted by chronicrants

When the government forces pain upon us

March 17, 2016

This week there was a difficult statement from the Centers for Disease Control. Well, difficult for people with chronic pain and their doctors.

There has been a lot of discussion around the use of opioids for treating chronic pain. It paints all users are addicts. It suggests that the deaths caused from addiction negate any benefit that might be gained from proper use of the meds. It suggests that there is no such thing as proper use. And so on.

For the record, I do not use opioids. I have tried them and have always found that they helped me very little and that their side effects were terrible. If they worked for me and didn’t have bad side effects then yes, I would use them every day if that meant living with less pain.

Also for the record, many close friends take opioids daily. They are not addicts. They take their medications responsibly. These medications allow them to do heroic tasks like shower, cook, and drive to medical appointments. Occasionally they can even do something fun, like have me over for a visit.

This week the CDC issued a guideline. This is non-binding, but it does usually have an effect on doctors’ practices. I won’t get into the details here, but they’re linked at the bottom of the article below. Suffice it to say, a bunch of people who don’t have chronic pain have decided that those with chronic pain don’t need opioids. Apparently Tylenol and Advil should be sufficient. In other words, they’re completely clueless.

I find this whole thing very upsetting. So on the one hand, I think it’s incredibly important to talk about it. On the other hand, I don’t feel qualified to properly and fully discuss it, and I find it upsetting to even try.

Here are just a few of my thoughts:

  • Lumping together all opioid deaths, including those from heroin use, is hurtful, hateful, and absurd.
  • How can they not be accounting for the increased suicide rate that will result from this? Do they not care, or do they not understand?
  • Do they really think people would take medications with terrible side effects if Tylenol and Advil (which aren’t harmless, by the way!) really worked?
  • Do they have any idea how many different things pain patients try? Do they know how many more things we would try if insurance covered them? I have such a list of things I would do if I only had the money and the energy!
  • Have they not considered that maybe, just maybe, limiting the use of legal drugs will lead to an increase in the use of illegal drugs?
  • If the concern is addition, why not work to prevent and treat addiction? Studies have made it clear that this won’t help.
  • Where is the compassion?

I want to say so much, but I don’t have the words. So here are some reactions I want to share. At the bottom of that article is a link to the CDC guidelines.

The chronic pain community put up a good fight and lost this round. But the fight isn’t over. I don’t know what will happen next, but I know that no one will be giving up!

4 Comments | Educating, Frustration, Medication, Pain, Politics, Rants, Symptoms | Tagged: , , , , | Permalink
Posted by chronicrants

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