Monday, August 31, 2009
After doing a bit of detective work, I discovered that this billboard is a part of a public service announcement from www.DepressionIsReal.org. Another reads, “You’d never say, ‘It’s just cancer, get over it.’” Heart disease is also an illness used as a comparison. The television spot suggests that heart disease is like depression because the symptoms can be ignored; it’s like diabetes because it’s biological, and like cancer, it can be fatal.
In theory, the purpose of this ad is useful – trying to gain the same kind of attention toward depression that other illnesses get. But to my mind, this falls on its face.
Now why do I say that? I say that because of what the ad fails to acknowledge. I find it interesting that what isn’t mentioned is that all of these illnesses; diabetes, heart disease, cancer (sometimes), and depression are invisible. To me, that is the crux of what makes many chronic illnesses questionable. But you don’t look sick. It’s all in your head isn’t a comment reserved for depression.
I think we have all encountered people who have suggested that we could get well if we simply put our mind to it, or those who suggest that we’d be fine if we only stopped taking our medication and exercised more, etc. I have, in fact, basically had people tell me something to the effect of I have a friend who has lupus and she’s perfectly healthy. Aside from the fact that this is a complete oxymoron, the implicit message there is that I should be perfectly healthy, too, even though I have lupus. So I think that to say that people that have “recognized” illnesses are somehow not asked to account for them is absolutely, positively untrue. In fact, I think people that have chronic health problems are asked to account even more, to prove that we are actually sick, and not just attention hogs or drama queens/kings.
This ad also resonates with me because it has been discussed a lot that sometimes there can seem to be a competition in the chronic illness community as to who has it worse. I completely agree that depression deserves the recognition that this ad is trying to garner, but I do worry that it could be taken the wrong way, and sends the wrong message, even with the most well meaning of intentions.
I think I’ve come to realize that the reason why this ad rubs me the wrong way, and also, why I’ve felt pretty down on myself lately, is because I think I have unconsciously bought into this “just snap out of it” mentality. I’ve tried to ignore the recent issues that have cropped up, to no avail. The problems have gotten worse, and now I have several appointments looming ahead of me, with uncertain outcome.
And the reason I’ve let these things go is because it’s hard to be on guard all the time. In fact, it’s exhausting. To have to question every hiccup, every irregularity, to have to wonder if this new symptom is just a fluke, or the beginning of the next stage of an illness, or the beginning of a new illness...When, according to medical definition, your body has gone terribly awry, the new “normal” becomes exactly the opposite. The new “normal” is where everything is abnormal.
So, if even we tell ourselves to snap out of it, of course the healthy people in our lives are going to be wont to do it, too. It’s easy to play that game. Oh, you’ll feel better if you don’t concentrate so much on being sick all the time. Really, is that true? Because in my experience, it is far worse to go in the other direction. Once you’ve let your guard down, it’s easy to leave it down, and to leave the world of illness behind, unfortunately to the detriment of your own health. One of my friends made a good point, though: If it’s not something normal if you were healthy, then you, of all people, should definitely have it checked out. And while this is sound advice, it’s intimidating, too.
I guess the point of all of this is that even when illness is staring us in the face, even when it’s written in two and a half feet tall letters, it doesn’t means it’s done right. And all of these reminders don’t make it any easier to deal with. I know it’s there, I know I’m sick, because my body keeps reminding me…
Friday, August 21, 2009
If you thought that I’ve been notably absent this summer, you’re right. While I had intended on working on not over-committing myself, I did not do a very good job of it yet again.
After teaching a class spring term, I had to jump right into reading and studying for my preliminary examination, which I just finished today. The stack of file folders in the picture above represents all of the reading I had to do, or basically the last three months of my life.
The other big occurrence this summer is that I took a trip out to San Francisco to present a paper at the American Sociological Association annual conference. While I was out there, I also hit up Oregon to visit my aunt, uncle, cousin, and a very special blogger friend.
There were a lot of firsts on this trip. This was my first time flying in eight years, and my first time flying alone. My first time in California. My first professional conference. And this was the longest time I had been away since I was diagnosed with lupus and RA.
I was not feeling very well the Thursday before I left. I woke up from a catnap to the realization that I had my mail held before my cellcept was being sent to me. I feverishly e-mailed the woman in charge of sending me my meds. To make a long story short, a $25 cab ride later, and I was able to get the cellcept in hand. Needless to say, this sent me reeling a bit, making me feel like if this were any indication of the way the trip was going to go, I was in trouble.
I was also feeling a bit worried because the two weeks preceding my trip, I found myself having symptoms that I hadn’t had since before I was on medication for lupus and RA. I wouldn’t say I was flaring exactly, but there seemed to be at least a small portion of everyday where I would just get knocked-out, either with nausea, a headache, or mind-numbing fatigue. I suppose that it could be a result of the stress of an impending trip, professional presentation, birthday, preliminary examination, etc.
I kept wishing in vain that I could leave lupus and my meds behind for the nine days I was gone. Now that would really have been a vacation…
Despite the craziness of my medication mishap on Thursday, by Friday I was feeling totally pumped. I was desperate for a change of scenery… And Saturday I was off to the West Coast…
Apparently you can take the girl out of the Midwest, but you can’t take the Midwest out of the girl. I hate to say that I wasn’t super in love with San Francisco. It was very busy and incredibly fast paced. But I was able to take a trip with a friend to Sonoma, and I really enjoyed the beauty of wine country.
I got to hang out with a lot of people from my program, which was a lot of fun. It’s ironic that we have a hard time connecting up when we are all in Ann Arbor, but somehow, in San Francisco, we made it work!
Overall, my presentation went well. I have been asked to submit my paper for publication to an anthology on disability studies. I have to make a few edits on it, but it should be good to go in the next few weeks.
Getting to see my aunt, uncle, and cousin in Oregon was really nice. They are really laid back and the pace of life is very different than it is in Michigan. I drank wine at dinner every night. I can actually say I was able to relax.
And I got to meet my friend Maria, a fellow lupus blogger (http://www.mylifeworkstoday.com/blog/). She and I chat multiple times a week, and it was great to finally meet her in person. She has been a huge help to me in learning how to live life with lupus.
My goal had been to get away and leave lupus behind. And while that was an impossibility, I was pretty surprised that I fared as well as I did. I knew that because of various occurrences this summer, a change of scenery was in order. And obviously it was much needed. Managing the medication schedule was a bit difficult, but my body seemed to cooperate, as long as I took my meds in as timely a manner as possible. Er, that is, until I got home.
I flared the worst that I have in nearly two months. And I was quickly reminded of how bad I can feel, and how emotionally distraught I can become during flares. Lucky, however, I recovered in time to take my prelim…
I realized that I hadn’t missed anything good by not flaring. But it’s hard when your body is literally battered and bruised to be optimistic about where things are going. Monday night, I sat in a hot bath and sobbed. And the worst part was that I couldn’t distinguish between the emotional and physical pain. It’s really hard for me to deal with that. But in this game of illness, it’s all about living, learning, and adapting. And sometimes we fare better than others…
So, while I sought to get away from illness, I found it staring me in the face. But I think that’s a post for another time and place…
Oh yeah, and I turned 24 while I was away! And got a new computer!
On the Road Again
Then there are the things that I am less inclined to talk about. And I know what you’re thinking… there’s more that happened this summer? Is that possible? Oh yes, yes it is. And I’d really like to talk about it right now, but I can’t. I’m still trying to make sense of things myself, and I have a lot to mull over.
I’ve discovered a new mantra, though, which seems to be working very well for me. It’s something my mom came up with, and it has kind of stuck. Take the garbage and put it in the trash. Take the trash out to the curb. And leave it there. Double bag it, if you think it’s going to try and escape. Every time I find myself thinking about things that have frustrated or hurt me, things that are being given far more attention than they deserve, I say this mantra over and over to myself in my head, and it really does seem to help.
Just because I haven’t been blogging, doesn’t mean that the blogosphere hasn’t been busy in my absence. Check out the latest edition of Grand Rounds and Patients For A Moment. Additionally, Kairol Rosenthal asked if she could use my post about her book as a guest post on her blog. It happened to be picked as an Editor’s Pick on salon.com I’m not even exactly sure what that means, but you can check it out here.
I’ll be heading off to spend a few days with one of my really good friends, so I’m looking forward to that. And I’m seeing a new doctor next Friday, a gastroenterologist, to see if we can get to the root of the appetite and various other issues I’ve been having lately.
That’s all for now. Just wanted to let all my loyal readers know that I’m alive and doing fairly well, and haven’t fallen off the face of earth, even though it may have appeared that way!
Friday, August 7, 2009
In the picture above, you can see that I have all of my meds, Biofreeze, and hand sanitizer in an airplane-approved bag. Plus I found a mini version of my pill organizer, a note card with all my medications and doses, and the dreaded masks (I love that the instructions are a mile long, and the masks say warning across the mouth). So much for being inconspicuous…
I can only imagine the stories I’ll have to share when I get back!
While I’m gone, I urge you to check out the talk show, New Way RA, and also the Arthritis Foundation’s “Show Us Your Moves” contest at the Lets Move Together campaign site.
Wednesday, August 5, 2009
For those who aren’t lupus savvy, 710 is the diagnostic code for lupus. If you’re a lupus patient, you know that this code is as good as your name. She’s a 710.
Whatever happened to She’s a 10?
Lupus is a liability, and it ain’t pretty. To say that I am okay with this body is the overstatement of the century. To think that acceptance is going to come overnight is naïve and stupid. But to work on getting there is a whole other story. And probably the best that can be hoped for right now…
Illness is like an open wound begging to be healed, but only I can heal me…
I recently fell back on an old habit, well, maybe a habit I never really lost, of relying on others to build me up; to tell me I’m smart and beautiful and a great person, but… That’s not quite enough, is it? And you know what? It shouldn’t matter at all. What should matter is what I think. And what I think should be great.
I guess I convinced myself that one person, maybe even a certain person, could single-handedly “cure” me, but even if that person really desired to do that, it would never work. Because I’m the one who has to do the fixing. I think it’s possible for someone to make me want to be a better person, but a different, not sick person, I don’t think so. I think I got romanced into the notion that even the most unsolvable problems can be solved in the name of someone else. And now that just sounds silly.
I really struggled with writing this post. But then I had a mini-epiphany. I’ve had several conversations recently about people in my life who I’ve forgiven, some for slights that some people say are irrevocable, others for small things (some that seemed big at the time). And the truth is, we all have had people that we’ve had irreconcilable differences with. There are several people that are no longer in my life, and most likely, never will be again. And while that’s very sad, I prefer to concentrate on those who I haven’t cut out completely, regardless of what the transgression was, or who committed it.
As of late, it has become much better for both my physical and mental health if I can move on, and try not to harbor hurt, pain, anger, and resentment. And in most cases, moving on means forgiving. It certainly doesn’t mean forgetting. There are certainly good friends in my life who know they have hurt me in various ways, and some who don’t realize they have, who, while I may never forget what they did to me or I them, have forgiven.
The point is, if I can look at others and forgive all the crap, then I have to be able to look at myself and do the same. I have to be able to let go of all the crap I’ve collected over the last few years. And I probably won’t be able to do that easily, but I think a solid first step is acknowledging that it’s crap, that I can look at myself in the mirror and say, “Hey, that’s me. And I’m okay with that.” Illness and all…
A few years ago I read “Why I Wore Lipstick to My Mastectomy” by Geralyn Lucas. I wasn’t sick then, but I guess I may have always had a penchant for patient narratives. The point is, Lucas was diagnosed with breast cancer at the age of 28. At the end of the book, she gets a tattoo on her reconstructed breast and then has topless photos taken. Yes, this is a very crude summary of her story. But the point is, after this experience, she sees herself as beautiful for really the first time in her life, despite, or maybe in spite, of everything she had been through.
I’ve had several experiences that make me see myself differently, because when I look at myself in the mirror, I see a person that I’ve never seen before…
And that’s the true test.
Many of us, namely me, spend so much time obsessing over what other people think of us that we lose sight of how we feel about ourselves. Or maybe we feel so badly about ourselves that we only have others to rely on to build us up. Being a 10 is as much a mental pursuit as it is a physical one. Being ill, you can be the most important person to yourself and be unapologetic about it. Sure, people may think you are selfish, but the truth is, if you can’t put yourself on the top of your priority list when you’re ill, you’re screwed. I’ve learned this the hard way (and I’m still working on it)…
Recently, I did something for myself that may appear to some as incredibly self-serving. I asked a friend to take some pictures of me. I wanted my friend to capture me naturally; no makeup, in my own environment. What I really wanted these pictures to say is, “This is me, take me or leave me.” And I think that’s exactly what she did. Like I said, I don’t have any make-up on in the photos. But it’s really the first time that I’ve been able to look at a picture of myself and say, “Wow, that’s me, and I kind of like what I see.”
For the past two years, I really couldn’t stand looking in the mirror. When I first got sick, I was so confused, all I saw was a stranger. And then once prednisone came into my life, I really was staring at a stranger; a zit-faced, water-retaining chic. It’s like those nightmares people have about showing up at their high school reunion, but this was real, and a lot worse than I ever imagined. I had to, and not so nicely sometimes, tell friends not to tag me in photos on facebook. And no one really understood, and I never really cared to explain. So to be okay with seeing pictures of myself is a huge step from where I was before.
I guess knowing firsthand that the body is fallible, I wanted to show myself that in the face of everything, maybe I’m not as fallible as I thought. And I honestly think if I had tried to take pictures like this before all this illness stuff, I don’t think they would have come out the way they did.
If looking and feeling like a 10 were easy, then everyone would be a 10. I think the only real way to be a 10 is to be okay with yourself. The rest will follow… I think most of us desire to the best we can be; the best child, parent, sibling, friend – and the list goes on and on. Illness can definitely challenge this. And maybe I’m just getting tired of being down on myself all the time, feeling as if there’s something that I realistically could have done to prevent these illnesses from happening to me. Just as I do not want to harbor hurt, pain, anger, and resentment at people I want in my life, I no longer want to harbor hurt, pain, anger, and resentment at myself (for things that I have no control over). Because I have control over the way I feel about myself and the way I treat myself, and in the face of illness, that has become more important than it ever has before.
So, I don’t know what’s going to fix me. But I know it’s going to be me who is going to have to do the fixing. My friends say great things, and that’s awesome, but it doesn’t mean much if I don’t see what they see, and I think they must be talking about someone else.
So maybe I’m the Geralyn Lucas of lupus (because I’ve been considering getting a tattoo, but that’s a whole other story). Or maybe I’m me, trying to do what I need to do to make myself feel like more of a person of worth, rather than damaged goods. Maybe I’m finally able to look at the crap and see that it’s just that – crap.
A 10 can certainly become a 710, but can a 710 be a 10? You decide…
I have to give a shout out to my friend Rachel, who took the pictures. Honestly, I always knew Rachel was a woman of many talents, but her photography skills really blew me away. You can check out Rachel’s pictures on her site, Shadow & Soul Photography, or read up on her photographic adventures on her photo blog.
(Photo Credit: Rachel Hyerim Sisco)
Monday, August 3, 2009
Hi, Lisa. Thanks for connecting with us here today at Getting Closer To Myself.
LC: Thanks so much for having me. Its wonderful to get to visit so many amazing blogs on a variety of health and illness issues. All of you who blog make such a difference in increasing awareness --not just about illnesses, but the people behind them who live with the condition and pain each day.
Thanks. Speaking of awareness, tell us about National Invisible Chronic Illness Awareness Week. That's quite a description.
LC: Yes. Often I refer to it as just Invisible Illness Week or NICIAW. Our mission is to have a designated time, worldwide, in which people who live with chronic illness, those who love them, and organizations are encouraged to educate the general public, churches, health care professionals and government officials about the affects of living with a disease that is not visually apparent. Through programs and resources, we seek to recognize the daily challenges of more than 100 million adults and children who live with invisible illness.
We hope that this week is an additional opportunity for people to use it as a catalyst to be able to discuss or blog about what it is like to live with their particular disease. They can share how they may look healthy most of the time, but are still dealing with chronic pain or uncomfortable and annoying side effects.
Explain to me what a virtual conference is.
LC: A wonderful opportunity to "attend a conference" without every having to get dressed! The main part of the Invisible Illness Week is our 5-day virtual conference--which is completely free--September 14-18. There are 20 speakers who are experts in their area and with chronic illness they will be giving a 40-minute presentation and then taking live calls. The seminars are
M-F, 4 times a day on a variety of topics: going to college, marriage, applying for disability assistance, cleaning, finding the right job, faith, preparing for surgery and many more. All are free, listened to live or later, and even downloaded from itunes to your ipod or purchased on a CD.
That sounds amazing. So, do you have last year's seminars available?
LC: They are. Before last year we used a chat room and had written transcripts, but 2008's can be listened to free from your computer, downloaded from itunes, or purchased on a CD.
I know many of us would love to opportunity to go to a 5-day conference but ironically, because of our illness, things like traveling, finances, sitting that long, etc. it's just not possible, so this is an ideal solution.
LC: Isn't it? It's kind of ironic that we began virtual conferences years ago, but now many organizations and companies are making this a trend because of the economy and costs of a real conference.
How did you get involved in the chronic illness blogging world?
LC: I had started the restministries.org web site in 1997 and so when blogging first started, I was actually too busy with the ministry work and writing for my web site to jump on the blogging bandwagon. After seeing it wasn’t going anywhere and learning how one can reach more people because of the feeds of blogs, etc., I finally started blogging maybe five years ago. It’s just in the last couple of years I have moved most of the content that used to be in the weekly HopeNotes newsletter over to the blog. I enjoy coming up with new topics and angles and having the opportunity to read all the comments from people. It’s more interactive than newsletters. My blog is chronicillnesssupport.com.
Tell us why you started Invisible Illness Week? What made you see this as necessary?
LC: Well, a few reasons. I began Rest Ministries in 1997. It's a Christian organization that serves those who live with chronic illness and the sponsor of Invisible Illness Week. I kept seeing many people who felt very alone, misunderstood, and frustrated, feeling that their illness, pain, and suffering were completely invalidated. Some people have a spouse who even doubts the existence of an illness.
I also saw lots of family members, caregivers, doctors, churches, etc. who wanted to reach out to people with illness, but they said all the wrong things. Eventually they distanced themselves from their loved ones because they just didn't understand illness or how to respond to it.
The fact that illness and pain is invisible to see can make it hard for healthy people to understand. And those with illness can easily become bitter when their loved ones believe it is being exaggerated. It makes for a sad situation all the way around and I thought communication could be a helpful first step.
People I know have explained this kind of thing to me before. It does sound familiar (i.e. my life).
LC: It does sound familiar, doesn't it? Even those of us who would say we cope pretty well with a chronic illness still have moments when our frustrations can get the best of us. It can be as simple as legally parking our car in a handicapped parking spot and someone walking by gives us "the look" of skepticism. Or maybe one of our dearest friends innocently asks, "So, you must be feeling all better now, right?" There is a big difference between being sick and having a chronic illness and most people don't grasp that difference.
So you decided to start Invisible Illness Week and address some of these issues?
LC: Yes, I saw such amazing people who survive against all odds and still had hope and faith. I wanted to give them an opportunity to encourage others who were going through depression or hopelessness.
It doesn't make a difference what illness we have, where we live, how old we are, how long ago we were diagnosed, etc. The invisibility factor of our condition often gives us more in common than any other factor of our illness. We all have much more in common than we realize.
What illness do you live with, Lisa?
LC: I was diagnosed with rheumatoid arthritis in 1993, at the age of 24. A few years after that, fibromyalgia. I've never been in remission, so I have had a difficult time of it, though I know it could have been worse. Each day is a challenge and I am on multiple medications to just try to have some quality of life and keep walking. My hands and feet are pretty deformed now and I have many surgeries in my near future. My illness has gone from being completely invisible to much more visible and it's not just the pain that bothers me now, but the loss of being able to do things, or do them with ease. Driving or unloading the dishwasher is an event because of my hands. Suddenly stepping off a curb is a challenge.
I heard that you type with just a few fingers.
LC: Yes, it's true. I use just three fingers and my two thumbs to type. One adapts. I think I still can type about 50 words a minute, but sometimes my fingers start to go numb. I have a voice program I can use, but I am a fast talker and tend to get impatient with its limitations.
How can people find out more information on how to get involved with Invisible Illness Week?
LC: Thanks for asking, because just by helping us spread the word, for example, reading and sharing about this blog post, is the perfect start to be a part of our grassroots cause. I don't have to tell you that we don't have a marketing budget! I hope people know that they are making a difference just by introducing other people to our virtual conference. And not just those who
are ill, but spouses, parents, and caregivers. Everyone knows someone who is ill. You can find everything about the week at our web site National Invisible Chronic Illness Awareness Week, and we also have some fun items like buttons, tote bags, bumper stickers, silicone bracelets that say, "Invisible Illness, Visible Hope" and awareness pins.
Our theme this year is "A Little Help Gives a Lot of Hope.
We also are taking submissions for bloggers who would like to be a guest blogger on our invisible illness week web site. It can even be a blog post you have previously posted on your blog. You can also sign up to commit to blogging about invisible illness or Invisible Illness Week on your own blog through a service we are using called Bloggers Unite. We have a Facebook Cause page. You can share the 2009 video, the Twitter "Facts" we are sending out, and items like that. Be sure to remember to inform your counselor, doctors, pastor, peers, colleagues and others about Invisible Illness Week; we have brochures for just a few dollars.
Some people call their local newspaper and share about the week, their support group, or their illness experience. Since it's listed in Chase's Annual Events, journalists can tie in the personal story with the annual event.
Has social media made a difference in how you have been able to spread the word about Invisible Illness Week?
LC: Yes! So much, it's unbelievable. It's given every person who is interested in letting people know about what is important to them (like increased awareness about an illness) a forum. We've sent out some series of tweets in the forms of lists like 20 things to say to a chronically ill person, illness facts, 20 things not to say, etc. with the twitter hashtag #iiwk09. There have been some really deep conversations at places like Facebook, spurred on from our posts. Be sure to follow us @invisibleillwk on Twitter!
Over 1600 people have joined our cause on Facebook. We're giving away prizes to people who blog and tweet on the topic.
How do you feel can chronically ill bloggers impact the chronic illness community?
LC: In my opinion, the blogging community has had one of the greatest emotional impacts for people who have a chronic illness. I tend to be a part of the patient and general “illness” blogging community, so when I recently started reading more blogs on my own disease, rheumatoid arthritis, I was amazed at just how much content there was; how many people are under 50 that I can so relate to; specific blogs about experiences I have had or treatment and surgeries I am having or considering.
There are some excellent professional style web sites and books out there for people with practically any illness, but when I am tired and mentally fatigued, I just want something simple from someone who has “been there, done that” – not the professional details with words I cannot pronounce. It’s the blogging community I turn to. And as more and more media realize this, the blogging community will only continue to grow.
I know there are a lot of people who feel so utterly alone, as if no one understands what they are going through. What do you tell these people?
LC: Honestly, if I could just sit beside them and give them a long gentle hug, I would do that first. I struggle with just listening myself; I always want to start solving the problem! But I know someone to listen to them is what most people really need.
Secondly, I would want to validate that the feelings that they are experiencing that no one understands--well, it's true. Unfortunately, their experience is unique and no one can truly know what it's like to be in their shoes. Illness can be an extremely lonely event. That said, though the illness may be a lifetime event, the isolation doesn't need to be. There are a lot of ways to build relationships with people who do understand more than they may expect, they just have yet to be discovered. If you are unable to drive to a support group, there are many online groups where you will find comfort. The social network I began is at Rest Ministries Sunroom and I recently started Illness Twitters in order to connect people who twitter about illness or health issues.
You have written a book that gives 505 ideas on how people can reach out to someone who is ill, right?
LC: Yes, its called "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend." It's a helpful book that I refer to for ideas, even though I wrote it, because when someone I care about is hurting, it is hard to think beyond bringing them food. We also have cute little JOY cards that stand for "Just Offering You..." that look like a gift certificate. A person can fill it out with what he or she is able to do like running an errand or doing laundry.
That's a terrific idea! I would imagine that it would be easier to accept help from someone if it looked like a gift certificate.
LC: Yes, that is the idea. Groups like a support group or a women's ministry will find these perfect, but they are also nice for anyone who wants to help a friend and say, "Here is what I can do to help and a good time for me."
Well, Lisa, thank you again for joining us here today. And also for starting National Invisible Chronic Illness Awareness Week. I understand that in addition to your health challenges, you are also a wife and mom. I know it can't be easy to try to do all that you do.
LC: You are right, it isn't, but it's more than worth it! The people I meet or email each day keep me going and I have a husband who is incredibly supportive.
Thank you for hosting me here at your blog today. I hope your readers will head on over to National Invisible Chronic Illness Awareness Week and let their friends know about the free 5-day virtual conference. It's going to be a great time!