Category Archives: “…said WHAT?”

Bikinis, Battle Scars, & Warm, Woolen Mittens

I’ve been writing this post in my head for months – since January! Somehow it never got written, and then new things kept happening that I thought should be included…  and suddenly it was November. Tomorrow is Thanksgiving, so I am determined to finally get this post written and online. I can’t think of a more appropriate time to post it.

Living with a chronic illness often means that we are forever bemoaning the loss of yet another person who has jumped ship from our lives. While this sentiment is often justified, I sometimes feel as if I spend so much time focusing on those moments that I forget to truly appreciate the friends that have stuck around and understand what my life is like. Sometimes this understanding is blatantly obvious in the form of gifts and such, but other times it can only be found by reading between the lines.

I don’t really send my blog link out to people that I actually know in real life very often. I pour so many honest, personal feelings into my posts that everyone knowing them would just feel awkward and like a violation of my privacy. Of course, that means that people only know what I’ve actually told them, and I’ll be the first to admit that it isn’t always very much. Still, sometimes I get off-hand comments from people I’m not close to anymore telling me that they saw something on my blog. That always shocks me, because I sent them the link such a long time ago, and we’ve drifted so far since then, that I didn’t even realize they still look at it. Likewise, I have an old friend that I barely even keep in touch with beyond a big group dinner or drinks when she’s in town for Thanksgiving. Yet a couple of years ago, she told me that when she heard about the lupus she spent a lot of time learning about it online. She’s nowhere near the only person that told me she looked into it, but she was the one that shocked me the most because I’d never talked to her about it even once.

Way back last January, I met up with a close friend for dinner. She made a comment that stuck with me. She told me that when she, and our third friend, say, “How are you?” That means that I can gripe about my illness, or I can just say that I’m fine. Or I can ignore it altogether and just talk about work or the weather, and all of those options are perfectly ok. Those three words are so disarmingly simple. Just “How are you?” We say them all the time, sometimes even to strangers. But we don’t always mean them. They’ve become an extension of the standard “hello” greeting. Or, even when we do mean them, sometimes we don’t really want all the details. Over the years, I’ve learned which friends need me to skip over the illness-related realities, because I can see that they’re visually uncomfortable.

The funny thing is, those sorts of statements and questions are so generic that it’s easy to miss the depth of their meaning. It’s not so much what the words are as what they represent. I love when I get texts from a friend saying things like, “Thinking of you in this turn of cold weather.. Hope you’re doing alright.” It’s comforting to know that the sender cares and is aware of how my body reacts to this kind of weather…. but she doesn’t require a definite response. I don’t have to muster up the right way to say, “I’m holding up ok.” or “Yeah, it really sucks.” At the same time, now I can do so if I need to, without feeling as if I’m mucking up someone’s day with whiny texts.

The weight gain caused by my medications was something that I really struggled with. Losing the weight was a huge struggle too. Now, even though I’m more or less satisfied with my weight, I’m still self-conscious about the stretch marks that all the weight changes left behind. Honestly, last summer was the first time I’d worn a swimsuit, let alone a bikini. I was a little uncomfortable with it, but I knew that I was safe with my friends. I still made an awkward off-hand comment about the fact that I try to think of them as something along the lines of battle scars. They didn’t bat an eye. All I got were grins, chuckles, and a new conversation topic. And, frankly, I doubt that they even remembered the comment, but their reaction was so natural that I stopped feeling awkward about all the marks.

When another close friend of mine went on vacation to Machu Picchu, she came back with gifts for some of her friends. She’d chosen unique gifts for each person, based on what she thought they’d like best. She handed me a pair of thick woolen mittens, commenting that she remembered how much I’d struggled with the truly brutal winter we suffered through last year. Sometimes I think maybe people just sort of space out when I start talking about things like how brutal winter weather is for me… and sometimes they really do. I see their eyes glaze over. It’s times like that one, though, that I feel like I’m about to cry. In a good way (yes, boys, there IS a good way), because those moments remind me that there are people who are paying attention and who actually remember and care about what I said.

The other day a friend commented that I didn’t really have anyone to talk to when I was going through the whole diagnosis process. She meant that I didn’t have anyone who’d actually been diagnosed with lupus to talk to, but my response was, “Well, but I had you.” and I meant it. There is something to be said for talking with someone who’s actually been through this stuff, but it’s also easy to underestimate the importance of the continued support of the people that have always been there for you. You expect that those people will be around for you, so you aren’t shocked except if they suddenly aren’t anymore.

It’s hard to tell whether these people realize how much these little things mean to me. Sometimes it’s hard to articulate, because I’m not sure that there are really words for those feelings of love, and belonging, and reassurance (yet those words just don’t seem to encompass the feelings completely either.) I would say that “friendship,” is supposed to encompass all of those feelings, but that just seems cheesy. So I will just say this: to those of you I mentioned in this post, and to the rest of you who are equally important (but I had to stop myself before I wrote an entire book,) this is me saying that I’m thankful. I’m thankful, and I’m very, very grateful even if I don’t always manage to say so. I couldn’t have dreamed up better friends had I tried.

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Filed under "...said WHAT?", advice/suggestions, coping, shout outs & thank you's

Best Conversation I Had This Week

This post is part of the Health Activist Writer’s Month Challenge hosted by WEGO Health. I will be writing a post a day for all 30 days. You can learn more about it here:http://info.wegohealth.com/HAWMC2012.

Today’s topic:

Best conversation I had this week. Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

*note: I had to approximate the conversation, since I didn’t have a transcript. I’m using “friend” instead of her name, since I didn’t get a chance to ask her if it was ok for me to post this here.

Friend: I just read your latest post about the time capsule. LOVE.

Me: Aw. Thanks!

Friend: But, you know, there isn’t enough of YOU in there. It’s all about your disease.

Me: Well, yeah, I guess … but it’s a HEALTH time capsule…

Friend: Sure. But you aren’t your disease! When people open up that time capsule, you want them to know about you and how you lived with your disease. Not just about the disease. You are NOT your disease.

Perhaps this seems like such a little thing, at least on the surface. Here’s the thing, though: those of us with a chronic illness seem to spend half of our conversations trying to explain this to people. (The other half we spend trying to convince them that we’re sick in the first place. Ha.) So when a friend actually comes out and says this, it’s like a huge victory. At least, it was to me. This conversation definitely made my whole week. It was nice to know that at least one person in my life realizes that there is more to me than my disease (even if I don’t always manage to).

(For the record, I did go make some edits to the time capsule post.)

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painkillers can’t relieve the pain of painkiller stigma

Painkillers have been all over the news lately. It seems like report after report talks about deaths from overdose, how many teens abuse them, or how they’re over-prescribed. What those articles seem to gloss over (if they bother to acknowledge it at all) is how many people actually do need those painkillers. People are different. People feel pain differently. After all – when doctors us to rate our pain on a scale from 1 to 10, your 10 could be a 2 on my scale. Or it could be a 20 – far beyond my comprehension. Does needing a medication make us inherently drug-seeking fiends? I think not.

People don’t like to acknowledge the ill. It’s like it goes against nature, and society wants nothing to do with it. Evolutionarily, we’re weak – and only the fittest survive right? But does that really mean that we’re to blame for our illnesses? No, but it does mean that we have to battle with insurance companies to make them believe we need and deserve the coverage we require. We must battle with government agencies for disability coverage – which means that we then have to battle with the people who think that coverage like that supports lazy people who refuse to do a decent day’s work. Suddenly, it becomes a big political issue and the suffering people who sparked it are forgotten by the side of the road.

The idea that ALL ill people who request painkillers are drug-seeking addicts is preposterous. Unfortunately, worries about malpractice suits or ruined professional reputations mean that many doctors are too scared to prescribe painkillers. Which means that suddenly we are even battling with our doctors for the care that we need. I have friends who have been told by their doctors that although the doctors recognize that the patient needs the painkillers, they are unwilling to prescribe them. Doesn’t this sort of defeat the purpose of the entire medical industry?

All of this often leads to issues of people being unwilling to admit that they take them at all. And, so, I must admit that I have also been needing painkillers lately. By lately I mean since last Spring, and I must admit that a blog post about that change has been half-finished since then. I’m somewhat ashamed to admit that even knowing that the stigma is wrong, I still fell prey to its force. Who wants to be judged by friends, family and doctors alike? Who wants to see pity on their faces? Be told that they’re weak? I sure as hell don’t know anyone like that.

People see us as weak. As if by taking the pills, we have given up. We aren’t fighting for what we want. To that I can only say that if you are a person who can survive such excruciating pain 24hours a day without needing pain killers, then all the more power to you. Unfortunately, my body doesn’t work that way. Other people say that we rely to much on medication and not enough on natural methods. I can’t speak for anyone else, but I can say that I meditate, I do yoga, weight training and aerobic exercise. My mother performs reiki and massage for me. It’s just not always enough.

Painkillers are about more than pain. They’re about quality of life. I can’t say that I take the med every single day – or even every single week, but I can say that it makes a tremendous difference when I do take it. Some days, it just isn’t possible to manage without the help, unless I aim to spend my life whimpering in a ball on my bed. Believe me, I don’t. If the only way to prevent that, and to keep some purpose and direction in my life is to take a painkiller sometimes, then I’m ok. Because here’s the rub: it’s not like we want to take the painkillers. It’s not like we say “Oh, hey, let me go talk my doctor into prescribing a painkiller for me. that sounds fun!” We discuss our pain with a doctor because we were miserable and unable to live our lives due to the excruciating pain. Nobody wants to live like that, and so far this is the only way that society has found to help us.

Of course, the one pain the painkillers can’t relieve is the pain caused as a result of the stigma they carry.

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Filed under "...said WHAT?", community education, coping, in the media, insensitivity/ignorance, rant

The Ill and the Blameless

This post was nominated and selected to be part of  @commenthour‘s Comment Hour on Wednesday, September 7, 2011.

When I sat down at the computer this morning, my google reader list was one of the first things I went to look at. As a result, I started my day with this excellent post by @DrSnit over at Dear Thyroid: Chronic Snarkopolist: Blaming the Patient  I suggest everyone go and read that post not only because my response below will make much more sense that way, but also because it’s an excellent piece. I started writing a comment in response, but it got so long that I figured I might as well just write a blog post.

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Being told it’s our own fault (either directly or indirectly by way of phrases like “denied using” or “failed treatment” as mentioned in the article) sets us up for the wrong attitude. It makes us scared to get the help we need from doctors or the support we need from family/friends. Who wants to be told over and over again that they are to blame, that they are wrong, that they have failed? By engaging in behaviors that make their patients scared to visit them, let alone be honest about their life (habits, symptoms, pain levels, mood) doctors have already failed their patients before they even start treatment. They have failed to create an environment where we feel safe enough to be honest and destroyed the doctor-patient relationship. Of course, without that information they can never treat us whether it’s treatable or not. I realize that we live in a world where malpractice reins as king over the risks doctors face. How many times have you overheard the phrase “I don’t want to get sued for killing someone?” come out of a doctor’s mouth? Shouldn’t “I don’t want to kill someone.” be the worst that could happen? But I digress.

There are obviously some people who may have ended up with illnesses because of their bad decisions. Ok, fine. Let’s move on shall we? Focusing only on wrongs instead of on how to make things right as best we can moving forward is pointless. Who is that practice benefiting? Certainly not the patient. Certainly not the doctor. Nobody is perfect, but we are doing our best.

Doctors like to hide behind the fact that this is how they were trained to report information. Does that alone make it the right thing to do? I think not, but that’s just me and just me thinking isn’t enough. This is a change that needs to come from the inside. Something that doctors need to start looking at very carefully. Instead of brushing us off as whiny patients who, since we don’t have their level of education on the topic, clearly know less about it than they do. News flash: many times I’ve had doctors prescribe incorrect meds or order incorrect tests. As it turns out, when you have an illness that doctors don’t see every day doctors don’t always remember everything they learned 10-20 years ago in medical school & residency.

I think one of the things that I have found most frustrating about patient blame is that it comes from loved ones too. It isn’t only the doctors that have bought into this denial and blame game. My mother is always crying about how I’m still sick because I’ve accepted that my illnesses are chronic. By agreeing that they’re chronic, she says, I’ve decided I’m never going to get better. According to her, it’s MY fault that I’m not getting better because I don’t want it badly enough.

A friend once informed me that my life as a chronically ill person seemed like a soap opera. “Lifestyles of the Ill and the Blameless” we joked. She couldn’t figure out why there is so much drama going on all the time. Why must I switch doctors, can’t I just insist that they look into a symptom I’m worried about? Why must I switch doctors, can’t I just repeat myself until they listen? Why must I switch doctors, can’t I just put up with a ‘little’ condescension? If I know I’m doing the best I can then why should it matter if the doctor doesn’t think so? Why does it need to be such a big deal?? I told her the only thing I could: because it IS a big deal! It’s a HUGE deal! Blaming the patient for their illness, for the meds not working, for not being a obedient robot is ridiculous. There are some truly FANTASTIC doctors out there who listen to their patients and work with them to create helpful, supportive care plans. They broke away from the mold of traditional patient blame approaches and learned to work with their patients instead – isn’t it time more doctors started to think about doing the same?

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Fibromyalgia Awareness Day 2011

According to the National Fibromyalgia Association, fibromyalgia affects 10 million people just in the USA alone … and 3-6% of the world population overall. Of those people somewhere between 75 to 90 percent are women. Fibromyalgia involves both chronic pain and chronic fatigue, trouble sleeping, and a number of other symptoms including headaches/migraines. Many of us suffer from “brain fog” and are often forgetting things, which is frustrating to no end. There are so many other symptoms that can be involved like rashes and restless legs.

There’s no cure for fibromyalgia. We are treated with drugs that try to affect the individual symptoms, but they generally just take the edge off. At least for me, the pain is never actually gone anymore. Those are just the physical symptoms. It doesn’t cover the trouble with getting through every day life. Simple daily activities are difficult, chores are a major struggle, and a job is often out of the question. Our families, friends, and spouses also have to adjust to the new family dynamic as we spend much more time in bed and are less able to help out around the house.

One of the most frustrating things about this illness though? Hearing someone tell you that it doesn’t exist. We get told that we’re “just lazy,” that we should “stop whining,” or that we’re “looking for attention.” People think that it’s a disease of “bored middle aged women.” Well, let me tell you, we’re not and it isn’t. We are in PAIN. Our pain is REAL.

It isn’t just the general population that needs educating. Many doctors and other health professionals also don’t believe that Fibromyalgia really exists because it is diagnosed entirely based on symptoms and signs versus distinct tests. It’s hard to convince people that you aren’t just making it up when they defer to the opinion and authority of the disbelieving medical profession. This means it’s that much more important to educate everyone about this illness.

I deal with the endless pain, fatigue, fog and numerous other symptoms of this illness EVERY DAY. So do millions of other people, including number of my friends. People have slowly begun to recognize that fibromyalgia is real. Major hospitals such as the Mayo Clinic have now recognized it. Still, we struggle to convince people every day. I hope that together we can educate people to help them understand what we suffer through.

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Sometimes a Whine is a Good Thing

There is a lot of chatter that goes on in the Twitterverse in which the many chronic disease sufferers live online. People use it as a forum for different reasons. Some use it to hear from people who are suffering from similar situations – common circumstances, advice, etc. Others take that one step further and look to interact with those people, to make friends and speak with people who can say “I understand” and actually do.

There is, as is understandably the case, a large amount of what some may term “whining” that goes on in such conversations. I beg to differ. These are trying illnesses that we deal with daily. Incessantly. From the time we wake up until the time we fall asleep – well, if we even manage to fall asleep at all, that is. It’s frustrating. It’s exhausting. We post these tweets because they help us get through the day. To function as best we can in the “real” world of people who don’t understand. Which is why we turn to the people who know what we mean when we post those tweets: the people who are posting similar tweets.

Now, as best as I can tell, much of the argument (often expressed by way of the private “direct message” feature) against such tweets is a complaint that we don’t get very far by posting them. Perhaps people think we take too much refuge in these tweets, too much solace in something that might not affect the “real world” interactions we are invariably forced to take part it. Again, I beg to differ. Sometimes venting our frustrations on blogs and twitter keep us from frustrating people in the “real world” with complaints that they don’t understand. It’s not just about their understanding, it’s also about being a burden. Many of us feel a lot of guilt about the constant demands we put on our loved ones: doctors visits, chores we can’t do, money, and so on. Constant whining seems like one more thing for them to bear, and another reason for them to feel bad for us. Or, as is more prone to upset and induce guilt in my case, to worry about us.

Still, I do think that there should be some efforts made to help those in our “real world” lives understand what we are going through. After all, it seems rather self indulgent to go on in a woe is me nobody understands me vein of thought without at least trying to fix that situation. … but that is rather more easily said than done. Some people fail to understand no matter how many times we try to tell them about it. I’m not ashamed to admit that sometimes I just don’t feel that it’s worth depleting my limited energy stores to educate them.

Frankly, I don’t think anyone has a right to tell me that I’m whining too much – or to tell anyone else that. After all, that is the joy of the internet, is it not? We can choose who we want to interact with. Some people support others by joining in the necessary venting of frustrations, others support with reminders of strength and “I’ve got your back” attitude, still others provide jokes, quotes, or anecdotes. At the end of the day, we interact with the people who provide us with the right mixture of those things – and we try to do the same for them. That is the point of these interactions. Sure, sometimes it might be more helpful to remind ourselves of our strength, but a lot of times I just need to vent my frustrations and talk to people who won’t judge me for doing so.

I do the best I can to be supportive and (dare I say it?) inspirational … but I’m just one girl, who is fighting hard to stay afloat in a sea of constant pain, fatigue, and disappointment. I can’t be upbeat all the time, nor should I be forced to be. I have enough stress and pressure and pain and so on to deal with without adding this layer of judgment. Of course, it may well be that those whining about the whining (*cough*) are annoyed by those tweets because they are just having a bad day themselves. So I’m choosing to shrug off these comments and criticisms that I have received. Take the whines for what they are – a necessary interaction for some. Or choose not to interact with those Twitter users. The choice is yours, fellow whiners, the choice is yours.

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go for the threading, stay for the insults?

So I went to the salon yesterday. I wanted to get my eyebrows threaded. No big deal. <15 minutes in and out. I was excited. It was the first day in over a month that I had the energy – and the time – to go take care of it. I may not be able to control the weight gain, but at least I can keep up with these little things that keep me from feeling completely un-presentable. I know, I know, I need to get over the weight issues. I’m working on it, I promise.

The salonist (?), however, felt a need to comment not only on the fact that I’d let my eyebrows get unruly, but also on the fact that I should really be taking care of myself better,

“[I mean] look how much weight you’ve gained. A girl your age shouldn’t be your size. You need a good figure to get around in this world […(I tuned her out here as I tried to count backwards from 10)].”

Counting backwards from 10 didn’t work. I was livid. I couldn’t figure out if I should cry or scream at her. Had I a more violent disposition, I probably would have been inclined to slap her. It was just so RUDE! I was well aware of how my eyebrows looked, and that comment was directly related to why I was there. To her, I’m sure it seemed like I couldn’t take a quick 15 minute trip, so OK, fine, make a comment. After all, her money comes from how often people visit right?

Still, there was really no excuse for the weight comment. It was not directly related to any services they provide. Moreover, it was unnecessary. I didn’t come in for a weight consult or a beauty consult of any kind. It’s not like I don’t know that I’ve gained weight, or how our society views fit people versus out-of-shape people, after all. I realize that perhaps it’s my own fault for thinking I could separate the concept of vain beauty in terms of things like eyebrows from body image issues … but she could have kept her opinion to herself, right?

Finally, I let loose with a (tone-controlled) ear-lashing. I informed her in no unclear words that I am, in fact, quite ill and I come here as often as I can work up the energy to do so, but frankly my health is more important than my eyebrows. I told her that she should try being so ill that she can’t get out of bed some days, then add on a boatload of meds that all cause her to gain weight and see how what kind of shape she’s in. She looked confused, but apologized profusely.

I left the salon with the realization that while I could elicit an apology, and, perhaps, some more polite behaviour in the future, I couldn’t really make her understand why I was so upset because it was so far outside the realm of her own experiences. On the other hand, would it have been better to leave well enough alone and just assume she wouldn’t get it anyway?

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