This post is part of a Patients For A Moment blog carnival that Duncan is hosting. More specifically, it’s part of Duncan’s “ILLiteracy Project” carnival.
Category Archives: insensitivity/ignorance
This post is part of a Patients For A Moment blog carnival that Duncan is hosting. This month’s PFAM blog carnival topic is “What is your favorite book about illness?”
(Note: Those of you who interact with me via twitter, etc know that I read voraciously. This means that my favorite book about illness today may not be my favorite book about illness tomorrow. I’m going to try to post book reviews from time to time of books that I have loved or not loved and why. However, for the sake of this blog carnival topic, I decided to pick up a book that was recommended to me, but I hadn’t read yet. As such, it isn’t my favorite, but I thought it was worth writing up a post about. I’m excited to see what other bloggers chose as their favorite books. I think my to-read list is going to be growing considerably in a few days…)
The book How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin was recommend to me by my therapist when we were discussing how hard it is sometimes for me to be a good friend and equally to deal with unsupportive friends/family. Pogrebin started thinking about this topic when she was fighting breast cancer and noticed the varied reactions of her friends and family. The book is actually a collection of short stories from people with varied experiences intermixed with Pogrebin’s own story. What I liked about the book was that she included the reactions to friends’ behavior as well. There are Dos and Don’ts lists and varied suggestions for how to rephrase common questions that are inadvertently offensive or difficult to answer. I chuckled over her commentary and lists of commonly heard comments and questions, many of which I’ve heard myself. A lot of this advice feels obvious, but it’s easy to forget in the stress of seeing a loved one fighting what they’re fighting. Moreover, I think different people will get different things from this book based on what their experiences have been so far and what sort of guidance they are looking for. It did seem a bit long, but I think that’s partially because it’s clearly geared to be helpful even to people who have never had an ill family/friend before.
I think the trick to reading this book (for both patients as well as friends/family) is to try to keep an open mind, remember that everyone’s needs are different, and not to get too offended when you disagree with something that Pogrebin or one of interviewees opined. The book is theoretically aimed at the friends/family of patients, but I think patients can get a lot of out of this book as well. One of the things that made this book feel more appealing for me was the inclusion of incidents in which Pogrebin felt she had failed her friends/family in terms of offering support. And, in truth, even a person fighting a chronic illness can be inadvertently unsupportive of someone else fighting the same illness, because the two people have completely different needs from their friends. There is no one size fits all answer to the “How do I be supportive?” question, and this book drives that home.
As a patient, it’s nice to hear stories that show me that I’m not the only one that has struggled with incidents where friends/family that I rely on were unsupportive. However, reading through these stories was also a great reminder that people generally don’t intend to be unsupportive. They want to help, but they don’t know how to help ME. I emphasize that because one thing that struck me as I read this book was that with so many people fighting so many varied illnesses, especially when combined with how much each person’s needs vary from the next, it’s entirely possible that friends/family are doing what they were told was helpful and supportive for someone else. If you’re told that it was helpful once, it stands to reason that you would offer the same help/advice again. From a patient’s point of view, one of the best things that I got out of this book was a reminder that I need to be clear about what I need from people. It isn’t fair to always assume that they’ll be able to guess, especially if what I’m going through is totally beyond the context of their own experiences or that of their other close friends/family. Reading what worked for other people gave me some new ideas of how to direct my friends/family towards what is actually helpful, hopefully without making them feel hurt or offended, because I know deep down that they’re only trying to help.
For friends/family looking for ideas on how to be supportive, this is a really good place to start. Reading different people’s experiences might provide a more detailed and diverse view of what a patient is feeling in these circumstances. This book may also provide some guidance of what is commonly found to be offensive. Of course, what one patient in the book found helpful might be totally offensive to your own loved one. However, the book can only provide a limited amount of guidance here. This is what I would suggest: I think that the lists of Dos and Don’ts are a good place to start. Pogrebin also included helpful re-phrasings of common questions/comments. For example, “What are you feeling right now?” instead of “How are you feeling?” or “I can only try to imagine what you’re going through.” instead of “I know just how you feel.” These are a good start, but at the end of the day I think that most people would be open to your sitting down and saying “Hey, I can’t begin to understand what you’re going through, but I really want to be supportive. Here are the things I’ve read, but I don’t know whether they apply. What would be helpful for you?” Remember, though, that if you ask and then don’t follow through, that person is going to be even more confused. The fact is, if you’re reading blogs and books to find out what you can do to be helpful, then you’ve already realized that you don’t have the information that you need. Blogs and books like this one can get you part of the way there, but you need to be able to customize that information to your loved on. There’s only one person who can tell you what you truly need to know, and just sitting down and having an open conversation shows how much you care and makes it possible for both of you to be happy in your friendship.
I think almost everyone who has been diagnosed with a chronic illness has at least one horrifying story of how something has gone majorly wrong. If we spend that much time getting complex medical care is it statistically inevitable that something is bound to go wrong at some point? I hope not, but with diseases that require a lot of juggling and refuse to follow a standard pattern…. That being said, many of our experiences, like mine, can be chalked up to nothing more than negligence or disrespect for patients.
When I first became ill, my lupus completely failed to present like a textbook case. This is a common occurrence, which is why so many people are not diagnosed for years on end. In any case, one day I found myself so intensely dizzy that I couldn’t stand up on my own without tipping over. My mom freaked out when this wouldn’t stop, and as it was after hours by then, rushed me off to the Emergency Room.
We waited for hours to be seen, but were eventually led back to a room. A doctor came in and asked a few perfunctory questions. Then she said she needed to do a lumbar puncture to see if the spinal fluid could give us any answers. I thought she’d tell us to go see someone in the clinic the next day, but she said that she didn’t want us to wait that long so she would do the procedure herself – immediately.
I don’t know if you’ve ever had a lumbar puncture before. I was told to basically curl up into a fetal position. The first step was to numb my skin. Then more anesthetic was injected along the path that the needle would go. As that anesthetic went in, I informed them that my skin hadn’t numbed since I could feel that needle. I was told that sometimes it takes awhile for the numbness to set in. I had to wait a bit for the numbing agent to work, and then the doctor came in to do the procedure.
That anesthetic didn’t do a damned thing. I felt that huge needle boring into my spine.
It hurt. Like hell. A needle going into the spine is a completely indescribable feeling. As I write this, I can still feel that needle going in and I’ve gotten all squirmy. I’ll never forget that feeling as long as I live. The doctor just told me shush and that I couldn’t actually feel it. Apparently, I was just scared and so I thought I could feel it. Right. I was awfully tired of this “it’s in your head” sentiment as I heard it often in the days leading up to my diagnosis. I told her very firmly this was not the case, and that I really could feel the needle going in. She told my mom that was I was just scared. She asked my mom to hold me still and quiet me down so the doctor could focus on the procedure.
Now, I am a strange person who can’t scream on command. I’ve never been able to scream on command, and as far as I know I have never before or after screamed at all. Oh but at that moment I was screaming bloody murder. To be fair, it kind of felt like I really was being murdered. Another doctor came rushing into the room to see what was happening. I managed to tell him in between sobs and whimpers. It was not pretty.
It turned out that the doctor who had been treating me was a resident. The new doctor, who turned out the be an attending, had me checked into the hospital to do the puncture the next day.
When I was checked in, I told the attending on that floor that I didn’t want that resident anywhere near my room. She worked in the ER, so there wasn’t really any reason why she should be treating me once I was checked in but I wasn’t taking any chances. I guess this attending (and perhaps the one in the ER) must have logged my complaint somewhere. The resident showed up the next day absolutely livid. She informed me, in a tone that belied her words, how sorry she was that the procedure had not gone well. The anesthetic had been given properly, so she wasn’t to blame. However, it was a hard procedure, and I shouldn’t have made such a fuss, because now she was in big trouble. Didn’t I know that a student has to learn?
I informed her that learning to do something on a patient shouldn’t mean torturing the patient. Moreover, if she wants to learn to treat patients, she ought to learn the basics first: listen to your patient, damnit! She should have listened to me when I told her that I could feel it, instead of just shushing me. My complaint wasn’t about how she did the procedure, it was that she had no respect for me as a patient. She ought to learn that first. I didn’t mince words. She flounced out of the room in a huff. Sometimes I wonder whether she ever got anything out of that experience or she just wrote me off as a horrid patient that got her in trouble for no good reason. One can only hope..
In any case, they finally did the procedure under general anesthesia, because there was no way in hell that I was going to allow that procedure to be done while awake. Ever again.
After all that, the results from the spinal fluid came back negative. Figures.
This post was included in the Patients for a Moment: Starting Fresh blog carnival hosted at chronicbabe.com.
A couple of months ago I started a new job. My Twitter friends were probably sick to death of hearing me talk about job applications – it took an entire year and a half to get one. I did find a good job finally and I’m happy about that, but it’s also hard to let go of the career I was SUPPOSED to have. Since high school, I worked towards a medical career. I took the advanced science classes – and sacrificed sleep to pass them. I put in the hours of lab research and community service. I shadowed doctors at ridiculously early hours of the morning. I even got in to a great medical school program and started attending classes. Then the lupus reared its ugly head and all of a sudden that dream was just gone. There was no way the crazy hours and high stress levels were going to get along with my lupus, so I was forced to leave the medical program. I think I’m still mourning that loss. I see my new job as a poor substitute for the life I wanted, and that just isn’t a great way to face the world. It certainly doesn’t help that my new job is in clinical research – a field that I was trying to run far away from because I knew it wasn’t where I wanted to be. It’s definitely not something I want to do full time for the rest of my life.
It’s so frustrating when people say things like “Oh well, that’s ok, you can just find another career.” Well, sure, I can find another career, but it won’t be the career I wanted. The one that I dreamed about and spent 10 years working towards. That one was taken away from me by factors beyond my control. I know people mean well, but those comments just aren’t helpful. And then there are comments that I get from other members of the chronic disease community. Things like “Why can’t you just be grateful that you can even manage to work fulltime. I’m never going to be able to do that again. I wish I could work somewhere – anywhere.” I get where they’re coming from. The loss of life goals and feeling like we’re stuck on the fringes of society outside the circles of “respectable” citizens that do their part is a very difficult part of the chronic disease reality. I certainly don’t mean to undermine their feelings when I complain about my job situation, but I also shouldn’t have to hide my feelings from my friends. Everyone’s life is affected differently by these diseases, even if the overarching themes are the same.
It probably isn’t great for my mental health to see my life in this pessimistic light all the time. So I think my new goal is going to be to remember that just because this is where I’m working now doesn’t mean that this is where I need to end up. I’m not stuck here and it’s time to stop being so bitter about what I’ve lost and start thinking about what I can still achieve DESPITE the lupus. It sounds so simple in theory, but I think it’s going to be even harder than I can possibly imagine. But all I can do is to try to keep steering myself towards the attitude that I want not the one that comes so easily right now. I may have started my job a couple of months ago, but I think the true fresh start is happening now.
Last night I attended a law school graduation ceremony. Not just any law school graduation – one of my very closest friend’s graduations. She’s been one of my absolute best friends pretty much since the day we met. We were 12. We’re almost 26 now. You can do the math. She’s essentially family. So when she asked me to attend her law school graduation, saying no never really occurred to me. How could I not go if she wanted me there? The fact is, I know how hard she’s worked to get there and I’m incredibly proud of her. Of course I am. How could I not be?
One thing I’ve realized about living with a chronic illness: it invades and taints every last aspect of your life down to your genuine pride in your friends’ accomplishments. As I sat there and listened to the keynote speech about all the things the graduates could achieve, I couldn’t help but think about the fact that my lupus and fibromyalgia took away my own professional degree. There is no longer a med school graduation in my future (despite the fact that I’m still paying loans for the time I was in med school). I wonder if that reality is ever going to stop stinging…
It can be so hard to watch as other people’s lives move forward while mine seems to be stagnant. It isn’t, not really, since I do have a job. But it makes me irritatingly repetitive as I try to emphasize the couple of impressive things about my job because it feels so inadequate compared to what other people in my life are achieving as their lives move forward and I’m stuck in a regressed career time point that I thought I was well beyond. One, in fact, that I specifically didn’t want and pointedly moved away from.
Of course, I didn’t say any of that. I hid it as well as I possibly could. I didn’t want my pain to take away from her big day. That wouldn’t be fair to her. I couldn’t bear the idea of her worrying about my sadness at the loss of my life plans when she should be celebrating the accomplishment of hers. There’s no reason why her mind would drift to the idea that i would be anything but happy for her, after all. And while it is inarguably not fair for me to have to hide my true feelings either, I felt it was the lesser of two evils.
Alas – (Ok so maybe that word choice is a little excessively melodramatic, so sue me.) – this is a problem that never really goes away as the lives of the healthy tick ever forward while we sit around in some, inaptly named as it is rather slowly sinking, quicksand.
This post was written for the Patients for a Moment blog carnival hosted by Diana Lee at Somebody Heal Me
The topic was “Who are you without your disease? What makes you more than just your disease? How have you adapted these aspects of your life so they’re not completely overcome by your illnesses?”
To you, I am a medical record number and an attached diagnosis. You see me in lab test results, medical file notes, and medication logs. You see my signs and symptoms and what has been prescribed to treat them. What you don’t see is … ME.
Medicine is supposed to be about treating the patient not the disease, but the reality is that 15-30minutes to review how I’ve been, assess how I am now, and consider options for the future leaves little time to get to know me. So here is a little peek into who I am outside of your exam room:
… expect you to see me as more than my disease, even though I sometimes struggle with that concept myself.
… will drop you in an instant, even if it means waiting 6 months for another doctor, if I think you are condescending in any way. I am not an idiot, I know my body and I know enough about what is used to treat my ailments that I won’t stand for someone talking down to me. If you don’t listen to me, I don’t see any reason why I should have to listen to you.
… am loyal to a fault.
… am ready to forgive, but never to forget.
… but not forever. I have zero tolerance for people who take advantage of me or take me for granted. I refuse to be in one-sided friendships.
… will never be found without a book near at hand. Of course, this is stressful for my wrists, so these days you’ll probably find me with my Kindle in my hand. My disease my make my wrists hate paper copy books, but I will never let it take away my love for reading.
… would do just about anything for the people who love me.
… love to travel, but almost never get to do so.
… don’t eat meat. No matter what you have to say about it and my nutritional (or malnutritional) state.
… don’t practice any religion, and don’t take kindly to people trying to convert me to theirs. As far as I’m concerned, the Dalai Lama has said it as well as I ever could: “Kindness is my religion.”
… you will probably never know it, but I write this blog. I do so because I know that there are thousands of people out there that don’t have access to resources any more than I did. I hope that I can be a resource for them.
… won’t eat the same thing two days in a row if I can help it. When it comes to food, I definitely need variety. Across different cuisines if at all possible.
… am still afraid of the dark, and not ashamed to admit it.
… love dogs, but hate rodents and will run out shrieking at the site of a cockroach.
… manage to handle the physical pain I live with, but can’t bear to see others suffer.
… have an unreasonable collection of shoes, clothes, and makeup. Yes, I know this. No, I probably won’t stop buying them.
… work full time. Ok, this one might be in your files. What might not be is that I don’t do it simply to be in defiance of your orders. I do it because I struggled to feel like I am a contributing part of my society, and I can’t handle that feeling.
… cannot be held responsible for punching you if you tell me that something is “all in my head” or “I don’t look sick.”
… am irrevocably hurt by betrayal.
… wish that there was a support group for people my age living with lupus or other similar diseases. I know you keep telling me that I need one, but I just don’t connect with the group that does meet.
… hate when you describe the mechanism of medicines to me like I’m a two year old when you can clearly see that I’m using pharmacological terminology. I hate that. Same goes for any aspect of my illness.
… work in clinical research, so I actually talk to breast cancer patients all day. And it kills me that I can’t actually tell them how much I understand some aspects of what they’re going through.
… hate talking to on the phone to anyone other than friends and family. If I can do something by internet or letter I will.
… of course, this doesn’t really work out, because I have to spend hours on the phone arguing with my health insurance provider.
… don’t tell anyone at work anything about my illness. In fact, I don’t even tell them that I’m sick. This means hiding my medical ID bracelet.
… attended medical school, and had to drop out because of my illnesses. And you didn’t. So I will always resent you for that.
… will not trust anyone until they have proven they are worthy of trust. This includes you. You have to earn it, just being a doctor doesn’t mean I’m going to bow at your feet and accept every word you say at face value.
… believe that an excellent bedside manner absolutely matters.
… think that some of you should never have gotten into medical school, and ought to get off your high horses. You’re not better than me just because it says “MD” after your name.
… and, finally, I have the most respect for doctors who actually ask about my life outside their exam room, instead of skipping that section of the medical history.
So the next time that I walk into your clinic, please remember, that THIS is who I am.
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.