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The Ill and the Blameless

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.

 —

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.

Sunday Breakfast Club: “Where’s the love, y’all?”

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.


A special issue Sunday Breakfast Club entry, one day early, in memory of all those who died on 9/11.


As today is the anniversary of the September 11 (9/11) attacks, I have been giving a lot of thought to how the world has changed since then. In the aftermath of this tragedy, I feel as if the world has become disjointed. Or, perhaps, it’s just that I am more aware of the seams between the world’s puzzle pieces now. Nevertheless, nine years later, we are still very much in mourning not just for the people who wrongfully died that day, but also for the innocence lost. … but what have we learned from this calamity? We have people threatening to burn Korans in a country founded on the beliefs of religious freedoms. … but I digress from a point that I haven’t even made yet: this lack of acceptance may or not have been so pervasive before 9/11, but it surely hasn’t gotten better since then… and it extends far beyond the realm of religion and politics. Many chronic disease sufferers would agree that it seems to be omnipresent in the medical world.

Maybe you remember the “Where is the Love?” song by the Black Eyed Peas and Justin Timberlake that came out a year or two after 9/11. Or maybe you don’t. It was, in contrast to the general merriment-driven attitude of most of their work, a pacifist plea. Debates about political, religious and moral convictions aside, I think their point is valid:

Yo’, whatever happened to the values of humanity

Whatever happened to the fairness in equality

Instead of spreading love we’re spreading animosity

Lack of understanding, leading lives away from unity

(…)

Where’s the love, y’all?

Where is our love for each other? If not love, then why can’t we at least muster up some acceptance and attempts at understanding? Maybe the question in this situation would be more appropriately phrased “Where is the empathy?” or “Why is there so little understanding?” Why are patients with medical histories documenting their years and years of painful existence being turned away as drug-seeking addicts? Why are the doctors who should be taking care to figure out what causes little understood diseases like fibromyalgia instead treating patients like whiny women who are just looking for some attention?

We used to just lock people away when we didn’t understand conditions like depression or bipolar disorder. It seems like an outdated notion, doesn’t it? Now that science has figured out some of the underlying biology, we use counseling and medications to help these people. The thing is, things haven’t changed as much as we like to think they have. Sure, we don’t lock up people with fibromyalgia. Instead we just treat them like societal outcasts. Doctors say the condition doesn’t exist, and without their validation of the disease society rolls its eyes at the people who are suffering.

As the population of people fighting fibromyalgia becomes more vocal and ads for drugs like Lyrica that are aimed at fibromyalgia increase, the topic rises closer to the forefront. We aren’t going to sit back anymore and let our doctors tell us, however indirectly, that we aren’t actually ill. A doctor treating patients with illnesses like fibromyalgia requires both signs (objective, observed by the doctor) and symptoms (subjective, what is experienced by the patient) to properly treat the patient. As in they can’t do it without us. After all, who would they be treating? Fatigue and pain are symptoms – and as far as I know they haven’t figured out how to measure what we perceive without our input. So why are we battling with these people who are supposed to be caring for us? Doctors are supposed to help those in need of medical treatment, but instead we are being blown off. Where is the empathy and understanding in that? Where is the commitment to healing (or at least alleviating suffering) that their profession was founded upon?

9/11 was a horrific tragedy. We are right to be mourning the loss of these people. … but why can’t we remember these people by trying to change the mentality that leads to events like these. A focus on an “us” vs “them” mentality, doesn’t really get us anywhere. I’m not delusional. I’m aware that reaching that kind of understanding on that kind of scale is a remote possibility, but we have to start somewhere. Why can’t that somewhere be in the doctor-patient relationship? As we fight wars overseas, let’s not forget that there are people battling for their lives at home too.


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.

Sunday Breakfast Club: Bones, S5E18, “The Predator in the Pool”

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

I usually enjoy Bones, but this episode had me all riled up. (Yes, I realize that it was a few episodes ago, but I don’t find much time to keep up with my shows…) The premise of this episode was that a woman killed a self-help guru who promised he could take away pain (and effectively cure her fibromyaligia) when his methods didn’t work. The worst part? She claims her pain [miraculously] disappeared now that she had killed him, thereby justifying her actions. The implication was that her fibromyalgia was cured after she had exacted her revenge/frustration.

Now, to be fair, Bones is not a show that’s known for being incredibly politically correct, they often pick cases based on people who do not live within the realm of society’s norms. Recent episodes included witches and hoarders. Still, this one (quite likely due to my own personal interest in the topic) was particularly offensive and, I thought, in bad taste. Living with an illness that people don’t understand is hard enough without major TV shows portraying it so ridiculously!

While, as far as I know, a complete definition for fibromyalgia is still pending, I think enough is known about it to negate the premise of the show. There was an article about it in the Journal of the American Medical Association (JAMA) as long ago as 1987 – over 20 years ago! Yet fibromyalgia continues to be a misunderstood (or hardly understood) disease.  Sufferers of fibromyalgia, their friends, families, and the doctors who believe them are constantly fighting to convince people that they are truly fighting a painful, debilitating illness not a psychological problem. Now I know that asking for an apology is too much effort for very unlikely return. Still, I wish someone would inform Bones’ viewers of how out of line this ending was.

Nevertheless, my dear readers, here is the question that I put forth this week. What do you think would be an informative way for fibromyalgia to be portrayed by the entertainment industry? I mean, I’m not sure that anyone would make it all the way through a portrayal of the daily aches and pains without getting bored. (Let’s face it – it would be a pretty uneventful show, right? I sure get bored with the tedium of it all.)

Also, if any of you have seen noted other references to fibromyalgia in the entertainment media please let me know. (I’m asking about both accurate or inaccurate – I’m just curious.)

A Letter to My Loved Ones

Thanks goes to Birdie Nelson at ChronicBabe Forum for passing along this letter.

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me. Please understand that being sick doesn’t mean I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit or call me on the ’phone sometimes I probably don’t seem like much fun. But I’m still me – stuck inside a body which doesn’t work as it should.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick continuously for months now. I can’t be miserable all the time – In fact, I work hard at not being miserable.

So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy! I am merely coping. I am sounding happy and trying to look normal.

Please understand that being able to eat normal food/sit down/walk sometimes doesn’t necessarily mean that I can eat normal food/sit down/walk all the time. Just because I managed to eat normal food /sit down/walk yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain. The same thing applies to time spent having a social life. Even more so for my ability to concentrate, as my brain gets foggy.

many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying or even thinking; “But you did it before!” or Oh, come on, I know you can do this! If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me a lot worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it may frustrate me to tears, and is not correct – if I was capable of doing some things, any or all of the time, don’t you know that I would? I am working with my doctor and I am doing everything I can to manage the situation.

Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic health conditions can affect the whole body, or as in my case be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense and long. You can’t always read it on my face or in my body language. Also, chronic health conditions may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to stand up/sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now – it can’t be put off or forgotten just because I’m somewhere, or am right in the middle of doing something. A chronic health condition does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. In all likelihood, if you’ve heard of it or tried it – then so have I! In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of itself can make me feel even lower.

If there were something that cured, or even helped people with my form of chronic health condition, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic illness. If something worked, we would KNOW. It’s definitely not for lack of trying.

If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. A chronic health condition is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to understand in general.

In many ways I depend on you – people who are not sick. I need you to visit me when I am too sick to travel … You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss although I fully intend to undertake them again, just as soon as I am able.

Thank you for listening. It really does mean a lot.

Sunday Breakfast Club: Grey’s Anatomy, S6E21, “How Insensitive”

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

Grey’s Anatomy has been a favorite guilty pleasure of mine since the show first aired, but lately I’ve been getting more and more bored with the show. So when I was told the latest episode was really worth watching, I obeyed but took the comments with a grain of salt. Turns out, my friends know me quite well.  The episode is about a bariatric patient who comes into the hospital, and they worked it around an underlying theme of patient sensitivity. There were some interesting comments made by the patient, his (thin) wife, and the doctors that are caring for him that got me thinking about perceptions…

The patient is always joking about his weight (calling himself a mountain and so on) and the implications it has for his care. Meanwhile, his wife is forever fighting by his side, insisting that he is just like everyone else. I loved the wife character – she was bold and quirky. Totally willing to put people in their place for being obviously inappropriate, rude, nosy and just plain mean: “It’s easy to make jokes about him. You didn’t know him before. You don’t know that inside all that is the man I’ve always known.”  “Joke with him. Make him feel like a person.”

How often do I try to tell people that while I might look different and no longer be able to do things I could before, I am still me somewhere inside a very sick body? I hate when people treat me like an invalid or act like I’m exaggerating how ill I am. This is me… it’s still the me that was in here before… I just don’t have the energy to show you that all the time …

An exchange between 2 doctors:

Dr. Shephard: [after saying they should send the patient a specialist center that’s set up for this type of patient] – instead of “spending our time and resources caring for someone who obviously doesn’t care for himself.”

Chief Webber: He has an illness that he can’t control… he needs help.

I mention this quote, because I think it’s a really key point that many of us have faced. People don’t always think we’re “trying” to get past our illness. They suggest that we pray more or differently, tell us about some remedy or another, or worst of all tell us to “just get past it already, forget and move on already.”

Dr. Karev “selfish […] I’m sorry that we’ve been tiptoeing around you all day trying not to make jokes. But you’re the one that’s gotta stop. Stop calling yourself the fat guy. […] I know what it’s like to have life hand you so much crap that you just wanna sit on the couch and die. But you gotta look at what’s in front of you.  [reminds him that he has a wife that loves him and a baby on the way]”

This is the quote that I really wanted to fixate on. He tells the patient not to joke, but I don’t think moving past this stage into a healthier life should mean that he shouldn’t be able to joke around about his illnesses. Having a chronic illness isn’t an easy place to be, and sometimes you just have to laugh at yourself to get through it because there’s nothing else left to do.  That being said, I think the end of the quote made a point. There are definitely days when I think I just want to be done with it all, and that nothing is worth this… but there is always something in the future that reminds me that there are still things worth living for in this world. For me, it’s my family and the friends I rely on all over the world. And the reminder that I’m working towards a degree I’ve wanted since childhood – a central life goal. A lot has stood in my way, but I’m not going to let this illness stop me from something so near and dear to my heart.

So, readers, what think you? What keeps you going when life has you wanting to sit on the couch and die?