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.


Should I write a book?

April 27, 2015

For a couple of years now, several friends have been trying to convince me to write a book about my experiences. I’ve been tempted, but only in a mildly curious way. After yesterday’s frustrating incident, I suddenly really wanted to write a book. The question is, what’s the point?

Blogging is one thing. It’s short little snippets. It’s free for me to do and free for you to read. It isn’t too time consuming for any of us. The topics vary. If I write a book, it would be a huge effort. It would have many pages, maybe a couple of chapters, devoted to the horrendous long term disability and social security processes. It would have chapters about insensitive doctors and ignorant acquaintances. It would explain what the symptoms feel like and the fear and frustration that come with them. I’d put it all in there.

So should I do it? I’m wondering if this would be of any use to anyone. While my ego would love having a book published in my name, I really don’t want to do it unless it would help someone. I’m not sure if it would. What do you think? Let me know in the comments, or email me at msrants at gmail.com or tweet me @CIRants and let me know your thoughts. If it’s a good idea, tell me why. If it’s a bad idea, tell me why. I don’t get offended easily, so go ahead and be honest.

I’ll keep writing here either way. I love this blog and the small community on here. I love the readers who comment. I love getting to know people. So this blog won’t be going away any time soon.

Thanks in advance for your opinions and advice!!


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.


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.


What doctors learn from us

April 19, 2015

Most of my doctors work at one of Boston’s teaching hospitals, so I sometimes have a student or intern in the room during my appointments. This past year, there was a fellow, Dr. N, working with the doctor who I see for my sleep problems. The fellow has been really great, and I’m sad that he’s leaving in June when the fellowship ends. Before he leaves for an exciting new position, I wanted to tell him how great he’s been. But he beat me to it!

At my last appointment, I pointed out that I probably wouldn’t see him again, and he looked sad and reached out to shake my hand. Then he said, “I’ve learned a lot from you.” I was completely shocked. He was being very sincere. I could tell that he really meant it, that he had learned a lot from me. I was truly touched.

I hadn’t thought much about him learning from me. I had been thinking about all I wanted to say to him about what a great doctor he is. I still told him, and I gave him specific examples. I asked that he try not to lose his enthusiasm and caring over time.* He blushed deeply and said he wouldn’t. I hope what I said sticks with him. What he said sure sticks with me. But in that moment, as I was thinking about what I wanted to say to him, I was caught off guard and didn’t know how to respond to his statement. Now I’ve had some time to consider it.

I try hard to convince doctors to be open-minded and understanding, but I forgot what an impression I might make on doctors who are completely new to the field. With Dr. N, it wasn’t just about open-mindedness and understanding. That was part of it, but I think I showed him what a chronic illness patient really looks like. I’m guessing he hadn’t seen many yet, and probably few like me who are so proactive no-nonsense. He saw my resilience and determination. He also saw my fear and anxiety. He heard me say I was willing to try anything, but push hard to prioritize non-pharmaceutical options. He saw me work incredibly hard and try many options, even the ones I clearly disliked or feared. He received many emails from me as I tried to improve my health, emails that were always short, to the point, and respectful. He saw me struggling to stay awake in appointments while trying to joke and keep the atmosphere friendly. He heard me state my symptoms methodically, without complaining about them. He heard me emphasize the disabling aspect of my symptoms in an effort to be taken seriously, even when no one expressed doubt, and I’d like to think he understood why I felt the need to do that. In a short time, he saw and heard so much.

I don’t know what exactly Dr. N meant when he said he’d learned a lot from me. I can only guess. But I would like to think that at least one new doctor now understands more about what chronic illness patients deal with, and will show them the compassion and understanding that we all deserve.

*Note: Dr. N really was fantastic. He went out of his way to do everything he could to improve my health. On top of his magnificent efforts and attitude, he was also very knowledgeable without being arrogant. I hope he goes on to be the amazing doctor that I suspect he’ll be.


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.


How chronic illness didn’t cause my anxiety

April 9, 2015

Two years ago I was sitting in a support group meeting when one member said, “Everyone with a chronic illness has PTSD.” The way he said it was so matter-of-fact that I was really surprised. It was the first time I had considered the possibility. After a moment, I decided I didn’t agree. I knew I didn’t have PTSD. I still don’t. But I understand much better why he said it.

Today I was emailing with a close friend about some anxieties I have. They all have to do with my health issues. Even the anxieties that don’t seem to be about my health issues, like anything job-related, can be traced to the lack of security I now feel because of my health issues. She asked if I might have PTSD. I’d thought about that before, so I know I don’t have it. I had checked the diagnostic criteria and while I have lesser versions of many of the symptoms, I wouldn’t get that diagnosis. I’m sure of it. So what do I have?

I have years of pain, exhaustion, nausea, diarrhea, and other symptoms. I have inexplicable symptoms that pop up at very inconvenient and completely unexpected times. I have years of the fear of not knowing what caused any of it. I guess that’s all to be expected.

But I also have anxieties that were completely preventable, the ones caused by society. I have years of disrespect, disbelief, and condescension behind me, not only from friends, coworkers, and acquaintances, but also from doctors. I had doctors mistreat me both emotionally and physically. I was a terrified teen who was falsely assured it would all be ok. Even then I knew the adults didn’t really know that. I was a scared young adult whose fears weren’t acknowledged at all. I worry about my health, my present, and my future every day, sometimes a lot and sometimes just a little, and I hear nothing more than platitudes from medical professionals, if that.

I have lost people close to me. I’ve missed out on more life experiences than I care to think about. My friendships, romantic relationships, and career have all been altered. My health has affected where I live, how I spend my free time, and even my ability to get a dog. There is no part of me that has been untouched by this.

And yet I’m one of the lucky ones, because my anxieties aren’t nearly as severe as they could be.

Still, I’m aware of them. I’ve been noticing them more and more lately. I don’t think they’ve gotten worse. I think that as my physical conditions have stabilized, for the first time I have the capacity to acknowledge the emotional toll this has rung. And while there’s the occasional larger symptom, mostly I notice small things. Talking to a friend about tattoos is fine as long as we’re talking about body parts where I haven’t had much pain, but when we talked about one particular popular spot, one where I’ve had my worst and longest pain, one that has involved the most mistreatment by doctors… even just typing this out my heart is beating more and I feel tense. Talking to my friend about tattoos there gave me a feeling that was completely unfamiliar. Being touched in certain places upsets me horribly. If a doctor touches my shoulder, my thigh, my back, I’m fine. But if they touch my wrist I just about jump through the roof. The pain there isn’t so horrible anymore, but the memories are. The memories of doctors asking if pressing certain areas would hurt, and when I said yes and asked them not to, they did it anyway just to see my reaction. The memories of doctors intentionally dislocating my wrist because they saw in my chart that it was possible and they were curious. The memories of me asking them not to, of me telling them how horribly painful it was, and of them doing it anyway. Who would do that to a scared 17-year-old? But they did. More than once. The memories of a doctor telling me I should stop complaining because others had it worse, and me leaving the office in tears.

When I see a new doctor I steel myself. I walk in with my medical history, my list of medications, and my questions for them. I’m all business as I interview them. But inside I’m quaking. I ask them specific questions and it appears I’m checking their abilities, but it’s more than that. I need to find out how they’ll treat me and I listen closely for the answers. I try so hard to figure out if they will respect me. Will they listen to my opinions about my own body? Will they take me seriously? Will they read research articles that I bring them? Will they scoff at my chosen treatment methods? Sometimes I get it wrong, but I try so hard to figure it out at that first meeting. I refuse to be treated badly any more, so at the very least, I try to make that much clear. I suffered through that for more than 20 years and I won’t do it again.

Sometimes I think about it all and I wonder, how could I possibly have come out of all of that without being somewhat scarred? And yet, I did ok for so long. Somehow, I managed it all. It was just the last few years that pushed me over the edge. It was getting so much sicker. It was having the doctors say there was nothing more they could do for me. It was doing my own research and having doctors tell me I was wrong, when I knew in my gut I was right (and if you’re a regular reader, you know that I was.)

And it was years of fighting with insurance companies and the social security agency to “prove” that I was really sick, to fight for the benefits to which I was entitled. That might have been the most scarring of all. It was stupid and unnecessary and hurtful, and I will never forgive any of the people involved in the creation of that process for treating sick people like criminals.

I’m generally a happy person, but sometimes I hear things coming out of my mouth (or being typed here on this screen), and I’m shocked at how angry and bitter I am. I don’t mean to sound that way, but I just can’t help it. And really, can you blame me?

It’s important to remember that anxiety can be a condition of its own. You can have anxiety without any physical illnesses. It’s also quite possible to have both, but have them be unrelated. It just so happens that I’m focused on my own type. I know that any anxieties I have are related to my chronic illnesses. It just so happens that the illnesses themselves aren’t what traumatized me the most. It’s the way people treated me because of them.

I wish you, dear reader, the best of luck with your own situation. I sincerely hope you are treated better, while I sadly realize that many of you are not, and many are treated even worse. I hope so much that one day these preventable anxieties are actually prevented.

(And since you might be wondering, no, I’m not in therapy. I would like to be, but I can’t see a private practitioner with my health insurance and I do not want to go to the major hospitals for personal reasons. So until I get different insurance or can afford to pay myself, I won’t be going. But again, I’m one of the lucky ones, because I’m functioning ok. And I’m very thankful for that.)


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