There’s no cure for me and you need to accept that

April 29, 2015

It used to happen more often. A well-meaning family member or friend would mention something about a cure “one day” and about me staying hopeful. Over time, those comments gradually ceased. I made it clear I didn’t want to hear it and they probably began to accept that it was unlikely.

Last week, though, a well-meaning relative made one of those comments. I was caught off guard, since I hadn’t heard it in so long. I tried to explain there won’t be a cure. In fact, no one is even researching a cure right now! And even if they were, and even if they were on the right track, it would be a long time before that cure was commercially available. Hell, few of my conditions are even being researched for potential treatments, never mind cures! But he kept trying to say it could happen, I couldn’t be sure, it was possible, etc.

Now here’s the thing about hoping for a cure: it makes the other person feel better. They can see how poorly I’m doing at a given time, and think that one day down the road I’ll be better, and it comforts them. I get that. And if they want to believe it, they can go ahead. What I don’t want is for them to discuss it with me. If I believed there was a cure coming then yes, I might be comforted, but I don’t.

My pain started when I was a kid. For many years my family, friends, and doctors told me that it would be ok, that I would get better, that the pain would go away. It didn’t. It’s been more than 2 decades and the pain is even more prevalent now than it was then, plus I have even more symptoms. “It will be ok” became a lie to my ears. I couldn’t believe it any more. I still don’t.

So talking about a cure isn’t helpful for me. Yes, I admit there might be a cure in 20, 30, or 40 years. But in the near future, no, there won’t be a cure. I’ve come to terms with that. I’m ok with it. Well, sure, I’m not thrilled. Yes, I want to feel better and travel and ride a bike, and pick up my nieces and nephews and do all those other joys in life that I can’t do any more. But I have accepted my reality. Now I just need everyone else to accept it. Or to at least not talk about cures when I’m around.

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

There are no safe spaces

April 26, 2015

When I started this blog, it was so I could have a place to rant about the frustrations of having chronic illnesses. Over time, it’s morphed a bit, and I’ve covered many chronic illness-related topics from many perspectives. But today it’s time for a good old fashioned rant again.

I was in what I thought was a safe space. I thought it was safe, so I let down my guard. I’m so used to keeping my guard up that I completely forget about it, until I let it down and something proves that I should have kept it up.

Today’s incident was unexpected. I was in a room of people who care about social justice issues. The afternoon was spent talking about what it means to be in an oppressed group, and how to be an ally to an oppressed group. Most of the talk was about racism and sexism, but there was a bit of talk about homophobia, biphobia, and transphobia. I also brought up ableism. Everyone was kind, respectful, and interested in learning. I was asked some great questions by someone who just wanted to understand a bit more about what the disabled community is dealing with. I connected with another person with chronic illness. It was a fantastic afternoon. I had missed most of the event, but at least I’d made it for the end and was feeling more or less ok.

Then it was time for a closing exercise. It involved walking around the room, which I could have done a few hours earlier, but not at that point. At that point I needed to sit. And that’s when I became invisible. Most people avoided looking at me. A few looked, and then looked quickly away. They pretended I wasn’t there. It was horrible. I thought about leaving, but that didn’t feel like the right thing to do. I thought about getting up and participating, but I knew I couldn’t manage it. So I stayed seated. And then later, I cried.

Thankfully there was a friend there, and as people left, I pulled her aside, told her what happened, and cried. I don’t cry often, especially in public. But I was so upset! For once I had let my guard down, and look what happened! No one was mean. No one said anything insensitive. But they acted like I was invisible, and I just couldn’t handle that. Not like that. Not today.

I’m still hurting. I can’t seem to get it off my mind. Plus, I’m dealing with the physical effects: the adrenaline surge left me shaky at first, but I calmed down and ate, and that helped. Still, for someone with adrenal insufficiency, that’s not good. And of course, crying is tiring, even when it’s a short cry. So now I’m drained, but I know I need to wake up early for a doctor appointment tomorrow. Damn!

And I’m just so pissed, because I was having a really nice day! I had wanted to attend this thing for weeks, and I wasn’t sure I’d be able to make it. Even this morning I had my doubts, but I made it and I’d had a really nice time! It was so wonderful until the end. And that just ruined the whole thing. I’m trying to hold onto that good feeling I’d had, but I just can’t seem to do it.

I put up with this kind of bullshit all the time. That’s why I’m so used to keeping my guard up. It feels like I deal with some sort of bullshit every time I leave the house, but this once, for just a short time, I thought I was safe. I’d dealt with the hurdles of getting there (and there were several, both at home and on the short journey) and I’d thought I was safe.

I left feeling sad, frustrated, discouraged, alienated, and mad. I left feeling like there are no safe spaces. My chronic pain support group has been safe with health stuff, but my guard is up for biphobia when I’m there… what if I mention a date with a woman and someone reacts badly? Today’s event was the one space where no sort of -phobia or -ism is tolerated, but being ignored and avoided had the same effect.

Please, someone, prove me wrong. Tell me about a safe space. Or if you need to vent about your own similar experiences, go right ahead. Leave your thoughts in the comments and do your own venting.

I just hope that one day, somehow, some way, I really will find a safe space.

4 Comments | Educating, Expectations, Frustration, Insensitive, Isolation, Limitations, Rants | Tagged: , , | Permalink
Posted by chronicrants

Easy things that aren’t so easy

April 24, 2015

When you have chronic pain, chronic fatigue, and other chronic symptoms, there are some everyday movements and actions that most people assume are easy, but which really aren’t. They’re painful, draining, and sometimes impossible.

I was reminded of this yesterday when my mom called. I told her I was in recovery mode from the activities of the day before. She knew I was resting, but she didn’t seem to understand that just talking on the phone was exhausting. I was supposed to be resting, so I shouldn’t have been talking on the phone, but she thought of it as a low-energy activity. In fairness to my mom, I should have been more clear about my limitations; that’s my responsibility and no one else’s. But it did make me think about how differently we perceive things.

So here are just a few things that others think are easy but which aren’t for me. And of course, it varies from day to day. Some days sitting up is no problem. Others it’s impossible.

  • Sitting up.
  • Cooking.
  • Walking down the street.
  • Walking around my apartment.
  • Keeping my eyes open.
  • Standing up.
  • Breathing.
  • Reading.
  • Eating.
  • Sitting down without letting my body just drop to the sofa/chair/toilet.
  • Talking.
  • Singing.
  • Concentrating on anything.
  • Drinking water.
  • Showering.
  • Watching a movie and following the plot.
  • Typing.
  • Thinking.
  • Moving my hands.
  • Keeping my hands still.

What can you add to this list? Please share your ideas in the comments. Then share this with your family and friends to help raise some awareness.

1 Comment | Educating, Fatigue, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

Where are all of the men spoonies?

April 15, 2015

It’s not a surprise that there are more female voices in the social media spoonie world than male voices. After all, many (most?) autoimmune diseases affect many more women than men, some by ratios of 2:1, others 3:1 or even higher. Women in many western cultures are also raised to discuss their feelings and problems while men in those cultures are raised to pretend their problems don’t exist and to hide their feelings. There are probably other contributing factors, too. In the end, it comes down to a predominantly female space. And this is a problem.

It’s a problem because men often feel the same kinds of isolation that women do, but they see no one like them with whom to discuss it, so that leads to more feelings of isolation. It’s a problem because men need to discuss how they feel just like women do. It’s a problem because we often feel invisible, and without male representatives, men probably feel even more invisible.

And yet, we know there are men in the spoonie world. I’ve seen several on Twitter. There are a couple in my in-person support group, though they’re definitely out-numbered by women.  They’re around, but they’re few and far between, it seems.

I wrote once about wanting to participate in this project. As you can see in the description, the author wants a diversity of writers so that all readers can see themselves represented in the book. The author recently mentioned that all of the stories she has received so far are by women. She needs men to contribute. Where are the men? Why aren’t they participating?

I’ve been fortunate to have some wonderful commenters on this site. Of course, I have no way of knowing the gender of the people who read this blog and who don’t comment. Often the commenters’ genders are clear, though. So far, they’re almost all women. Occasionally someone emails me, and they have been almost entirely women. I sometimes get tweets. Those are mostly from women. Where are the men? Why aren’t they participating here? Yes, a couple times I have written about periods and other things than cisgender men can’t relate to. But the majority of what I write, while it comes from a female perspective, can also be relevant to men. Just like what I write comes from the perspective of someone short, bisexual, and sarcastic, but people who are tall, gay, straight, asexual, and not sarcastic can probably relate to a lot of it. So where are the men?

I don’t know exactly why I see and hear so little from men in the spoonie world, but I’m saying right now that you’re welcome in this space. I suspect you’re welcome in many others, too, but I can only speak for my own. So welcome! I hope you stick around and leave some comments so we can get to know each other. You’re an important part of the spoonie community. I hope you find your place in it.

Leave a Comment » | Isolation, Rants, Support | Tagged: , , | Permalink
Posted by chronicrants

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