Guest Blogger Articles
Book Review–Everything Changes: The Insider’s Guide to Cancer In Your 20′s and 30′s
This is a blog post by Laurie Edwards, my friend and author of Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties
Book Review
Everything Changes: The Insider’s Guide to Cancer in Your 20′s and 30′s
Clearly I am passionate about the needs of younger adults who juggle typical age-related challenges like dating, marriage, building a career and starting a family—all with the added complication of illness. So when I heard about Kairol Rosenthal’s new book, Everything Changes: The Insider’s Guide to Cancer in Your 20′s and 30′s
, I was excited to see someone else focusing in on the younger adult population…And interested to see where the similarities and differences in emotions and experiences between patients in her book and those in Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties emerged. “But you’re too young for this!” How many times have you heard this? Whether it’s a physician, another (older) patient, or even a well-intentioned friend or relative who says it, the effect is usually the same: it dismisses the reality that patient is experiencing. When it comes to diagnosis, that kind of attitude can be dangerous. When it comes to diagnosing cancer in young adults, it can be lethal.
One of the things I appreciate most about Rosenthal’s book is her blend of personal and patient insight—she traveled around the country taping interviews with many young adult cancer patients—with factual urgency. Young adult cancer patients are typically diagnosed later and at more advanced stages because they are “too young” for cancer, and some 70,000 young adult cancer patients are diagnosed each year.
Rosenthal lets these patients tell their stories in their own words, and steps in to include her own observations and experiences in each chapter. From navigating the dismal world of health insurance to employment challenges to the need to advocate for your own health, Everything Changes covers the topics most salient to cancer patients at this stage in life.
>read more at Laurie’s blog here!
Read Full Post | Make a Comment ( 1 so far )GUEST BLOGGER: “My Secret is safe with ME”
GUEST BLOGGER: Coping with Unexplainable Fatigue
Something that a lot of us chronically ill people have in common is that we have limited energy. A lot of us can only do a small fraction of the thing that “normal people” do. Personally, I only have a couple of good hours each day where I can get out and meet with people, or do work for the SPCA, or even have lunch and shop with my Mom. And if I do that one day, then I’ll probably need to rest the next. And maybe even the one following.
For me, I know a lot of the reason I need so much rest (and have so little energy, a.k.a. “productive time”) is because of the side effects of my meds. I take seven different meds each and every day, and fatigue is a side effect of at least four. Another side effect that comes from individual meds, and the combination of meds that I take, is that my mind is sluggish. I often feel like I’m pushing my way through quicksand when I try to think, to process. That is pretty exhausting, too.
I sleep a lot. I mean, A LOT. I used to sleep for twelve or thirteen hours at night, be up for two, then nap for four or five, and stagger through the last few hours of the day. And when I was awake, I was so foggy, so mired in the quicksand, that my “awake” hours were not really awake, in an aware and able sense of the word.
Now, I have a new med (fairly new, I’ve been taking it since the spring) that helps to banish some of the murkiness and feeling of slogging through quicksand. It doesn’t take it away, but it allows me to have at least a couple of hours a day that I can write, or go out, or do housework, or whatever. And I don’t need to sleep so much: about ten hours at night, and I usually go two or three days without needing a nap. It might not sound like much, but it’s been a huge improvement to the quality of my life.
When I first had my breakdown, I didn’t sleep at all. I rested a lot, and I did probably fall asleep for wee catnaps, but I was desperate for sleep. Psydoc finally found a combination of meds that let me sleep (forced me to sleep) on a regular basis. My sleep today is not particularly restorative, despite how much of it I do. I think that my need for ten hours of sleep to be able to function is like the “normal” person having five or six hours of sleep a night for a protracted period. They can manage, they can get through their routines, but damn, what they’d give for a good night’s sleep. For me, a “good night’s sleep”, in terms of quality and not quantity, is hard to come by.
I’ve also found that I resent having to sleep so much. Not so much at night, but I fight and rail, tooth and claw, against having to nap. Another issue for me to work on. It’s a struggle to accept, especially when I was always on the go, constantly, before my mind finally forced me to stop.
It’s hard for many people to understand that I don’t have an unlimited well of energy to draw upon. My well is rather shallow, actually, and I have to save up the energy for a lot of days to be able to spend five or six hours at someone else’s house, or at a fundraiser, or wherever. And then the well is dry, and I have to spend a number of days letting the water rise again so I can do even the basics, like have a shower or cook a nutritious meal.
Anyway, something that I found immensely helpful, not only for my loved ones, but also for myself, was something called The Spoon Theory. Christine Miserandino of www.butyoudontlooksick.com is the one who created it. It is a way to explain to people who don’t have a chronic illness what life is like when you have one. It is a fantastic story, and I would really, REALLY encourage you to go here and read it. It will truly help you understand, and is better expressed than I could ever hope to do. So go. Now! Read it!
A former lawyer, Linds of The Muse Asylum spends her days carefully. She balances chronic depression and anxiety with her love of written and oral advocacy. Her passions include promoting animal welfare, preventing the abuse of children, and using her own experiences with mental illness to educate others.
Read Full Post | Make a Comment ( 7 so far )GUEST BLOGGER: The Daily Challenges of Coping with Invisible Illness
Living with an invisible illness comes with a lot of obstacles. The hardest obstacle was accepting that I had to live with this illness day after day. It took me a long time to accept it. I went through long periods of deep depression. I had questioned the purpose of my existence. I have yet to figure out exact ally why I’ve been dealt a hand of cards full of pain and suffering, after a childhood full of dysfunction. I can only hope someday that will become clear to me.It’s taken me years to deal with all it sends my way. My eyes finally opened up the day that my neurologist validated my leg pain of four years. I had complained about my leg pain symptoms for four years, with not one doctor running a test. All it took was a doctor to listen to my symptoms and react. The neurologist ran an EMG to find out what was wrong with me. It was one of the most painful tests I’ve ever gone thought’s was diagnosis with nerve and muscle damage in both legs and both arms. My legs are worse then my arms. But I finally felt validated and not crazy.
Some days, I don’t feel so bad and then there are other days that I just plain feel like every train in town is out to get me.
I think the one of the hardest things to accept is the reactions of people. There’s been many instances of me being told that I did not hurt that much or doctors ignoring my symptoms. It really hurts when people say you can’t hurt that much. I have to remind myself that it is my body and I am the one living with the chronic illness, not them.
For a long time I became very angry about there reactions to my illness. I’ve come to believe that if they want to be in denial its there business and I can’t let that define me. It still does bother me when people avoid that I even have a chronic illness. Some people find it easier just too totally avoid the topic of your illness. Once again it’s easier for them to live in their own denial.
Another hot topic is the fact that sometimes I use a wheelchair and sometimes I walk. Let me tell you I use both because I need to use them. I cannot walk too far or I will pay for days with extreme pain in my legs. Short distances are not so bad or if I know I can sit down from time to time. Then there are days I can’t walk at all.
Each day is a new adventure for me while living with lupus, fibromyalgia and its side dishes. I can never plan to have a “good” day because of these illnesses. Before I got sick I could plan things, now I can only have tenetive plans.
The many aspects that these illnesses have brought for me at times are overwhelming and I’ve learned to deal with them the best way I know how. One of the main ways I deal with living with lupus, fibromyalgia and its side dishes is spreading awareness of the chronic illnesses on my website
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GUEST BLOGGER: Being a Good Friend Even When We Don’t Feel Well
Last night I had the pleasure of listening to the talk given by Jo Franz during National Invisible Chronic Illness Awareness Week. Jo’s talk was entitled “How To Help Those Who Help Us”. Jo Franz has had Ms since 1977, so she knows of what she speaks. She has a wonderful website JoFranz which is worth taking a look at. She has also written a book, “Soar Unafraid: Learning To Trust No Matter What“, which I am looking forward to reading after hearing her speak.
I got to thinking about friendships after listening to the talk. I think one of the best points made about being a friend to someone with chronic illness is that often people don’t realize that the chronic-ness of the illness does not mean that it is going to remain the same. In fact, for many of us the process is degenerative. Because of this fact, many times we are left alone and forgotten. Both Jo and National Invisible Chronic Illness Week founder Lisa Copen, talked about how much it would mean for people who are our friends to check in on us regularly and be consistent in our lives and with their help to us.
All of that got me thinking about what kind of friend I am and what kind of friends I am looking for. For instance, it is easy when I am battling a flare to let things go, after all, I don’t feel well right? And while I am not one to beat myself up, I also realize that to the best of my ability I need to remain aware of what is happening in my friends lives even when things aren’t going so well in my own.
The people I am closest to have always told me how much they appreciate the fact that despite my illness, I make time for them and their problems. I remember their birthdays, anniversaries and kid’s birthdays. If they are going through a rough patch in their life, I try to send a card of support or encouragement, or even leave a voice or e-mail message just letting them know they are in my thoughts and prayers.
By being a good friend, I model the behavior I appreciate receiving myself and I get to show my love for the people I care about.
I think it is easy to fall into the trap of feeling let off the hook for some of our friendship responsibilities because we have additional obstacles in our lives. My experience has shown me that is a dangerous attitude to take. You let your friends down, and ultimately you let yourself down. After all, don’t we want to treat others as we wish to be treated?
What kinds of things do you do to be a good friend to others? What things do your friends do to help you that you especially appreciate? How has someone gone out of their way to help you? Have you had the opposite experience, such as the one I spoke of in my post on Friendship and Invisible Illness Week?
Please let me know your experiences with being a friend, and with finding friends who are supportive and understanding for the long haul.
Be kind!
Maureen Hayes, 41 years old, has been living with multiple chronic illnesses including chronic pancreatitis, fibromyalgia, endometriosis, adrenal insufficiency, arthritis, reynouds syndrome, IBS, interstitial cystitis, multiple medication allergies, to name a few, for the last 30 years. She is on disability due to her illnesses, but lives with, and helps to care for, her 75-year-old mother. She is active in her church, especially in visiting the sick and homebound. She was inspired by National Invisible Chronic Illness Week and many of the speakers, and began her own blog Being Chronically Ill is a Pill! as a result. She enjoys writing, reading, scrapbooking and photography. She hopes to follow in the steps of many of the speakers and participants of IIAW by trying to raise awareness of invisible illness, provide help and support to those who suffer from them and to launch her own business in this area.
GUEST BLOGGER: That “Soil” of Illness is a Great Way to Explain It All
Hope can grow from the soil of illness.
What an appropriate theme for National Invisible Chronic Illness Awareness Week, and it has such a personal meaning to me. Let me share that meaning with you. I am a woman who has lead an extraordinary life, I am a Mother, a Grandmother, a photographer, a college professor, a crafter, a writer, a great cook, the site maestro on WeAreCrohns.org and a gardener.
Did I mention that I am medically disabled due to 11 different invisible autoimmune illnesses?
To maintain a better quality of life I had to end my career, go on SSDI and start down another path in my life. Its been eight years now, and I still miss it terribly, but be at have finally come to the conclusion that although I have retired a few hats that I thought I would always be wearing, but have actually replaced those hats with new hats that are so fulfilling to me right now, that I am not even missing the old.
One new hat, (but it could also be classified as old,) is my gardeners hat…the only difference is I have way more garden now to tend than I did when I was well. I tell everyone I know that it keeps me off the streets, but its way, way more than that.
The constant positive metaphors and analogies that come along with gardening and living with long term chronic illness are countless. The simple pleasure of just being out in the garden, feeling the cool wet soil in the spring turn into the warm soil of the fall that bears the fruits of my labor of love during the months between.
But even after the snow falls each year, I have plenty of pictures of my gardens to lovingly place in my garden scrapbooks, to place motivational and inspirational quotes on to send to people that I know need a pick me up, and I have catalogs to look at and plans to move this plant here to there, and then its time to start seeds, and then its time all over again to go back out into nature where my world has no illness, no pain, no sorrow, but only good karma, peace, and such a wonderful sense of well being.
I seem to come to terms with my health issues when I am out in the garden….I do an awful lot of thinking in the garden. I mediate in the garden. I pray in my garden. I do light morning stretches out by my koi pond in the garden. I journal and blog in my garden, and most recently have been making web cam diaries in my garden. I also do a lot of weeding in my garden.
Figuratively speaking and intellectually speaking. In essence, I purge my mind of any bad self talk and sadness I may have about current health issues and come away from my garden with renewed strength, hope and optimism.
They say, you get what you pay for…well, I put countless hours of love and affection into my roses, iris, and lilies and other countless perennials, and I get millions of smiles in my heart, on my face, in my soul and of all the people I then give them to. All this on top of all the aches and pains that come with gardening. They end up being such a small part of it all though.
You see, you don’t have to be healthy to plant and maintain a garden. You can have as few as one plant in your home, to a few small containers on a deck to a few plants in a small garden where you can sit and enjoy them. It’s really about the self satisfaction of caring for something living and watching it flourish and then keeping that wonderful feeling of love and satisfaction stored away deep inside of you to enjoy on a day you are not feeling well.
I think one of my greatest joys is giving people bouquets of cut flowers. I usually have a rose shears in my back pocket and it’s common for me to cut a rose and hand it to someone walking down my sidewalk who tells me how beautiful my garden is. My garden makes me feel beautiful when I am not necessarily feeling that way. My garden makes me proud of the job I have done taking care of all the precious flowers in my garden. They are like children to me.. Each and every one of them…
I literally welcome them in the spring when the buds start peeking out of the still frosty ground. When the tulips and crocus pop up and bloom it gives me a renewed sense of hope and optimism for the future….Its like I am able to recharge my strength, my courage and my will in the spring. As the spring gets a bit warmers I uncover and dig up my 45 rose bushes to see that all of them survived yet another winter to be tipped upright once again so that within a month they will render the beautiful scents and colors that fill me with happiness.
As spring turns into summer, there is not a day that I do not appreciate being alive to enjoy watching all my flowers grow, into something most spectacular! Spring, summer and fall in my gardens provide me with endless hours to photograph the beauty of my gardens. I watch patterns of light in my gardens. I know exactly when the light falls on any particular plant at anytime of the day that presents the best light in which to photograph its beauty.
Then, that beauty in all my photographs I look at over and over again during the winter for inspiration, and I share that inspiration with others. The simple fact that I can grow something so beautiful from a seed into something beautiful that will touch others positively has made me feel whole again. I feel important and viable again. It gives me personal joy, happiness and fulfillment like those same feelings I got from my career. It becomes a full circle; I sew what I reap and reap what I sow.
And I sow the hope and strength I get from my gardens to others as the site maestro on a great website called WeAreCrohns.org. I stumbled across this website shortly after it started last December and I have found my true position in life there. And that is using the 37-year journey I have lived while living with Crohn’s disease, to give hope, inspire and motivate others who are living with the same illness.
The mere fact that I have suffered terribly during that time is not what I share with the members, but I share what I have learned during that time, I share my philosophy that you CAN live a positive and proactive, worthwhile life even though you have a unique set of health challenges. Don’t let your circumstances define you, you have to have the mindset that you can and will live your life to the fullest as you can.
I let people know that it better to go to half a concert, or movie than to not have gone at all, its all a mindset, and requires lots of thinking outside the box…you are only limited by the restriction your mind puts on you, not what your body says you cannot do. I am a firm believer in the words never say never. You just don’t know until you try.
I would rather try to nurse a little seedling back to health even if I knew it wouldn’t make it, because there is always the chance it will thrive. In my garden I have the time to reflect over all the things that have happened in my life and I have been able to find the answers to my questions in that I haven’t suffered in vain, because I have much to share with others that can only bring them hope because its really quite simple, even though I have been ill for almost 4 decades, and I have the capacity to focus on the positive. I have learned from the negative or painful experiences involving my health issues, and then moved on.
Even in the worst of times, we need to muster up enough hope for the future, because in reality, we can’t go back and fix what we have lived through. But, we can be proactive, we can take part in our future good health, and we can do that by creating awareness.
Awareness for Invisible Chronic Illness, and awareness for our own individual medical conditions. The more noise we make, the more proactive we are in getting involved and helping others get through their rough times, not only helps others, but we model behavior that is caring and compassionate to others who may not be aware of our health issues. Treat others as you wish to be treated.
It comes back to the soil, I love digging in, in my garden. We sow what we reap, and we reap what we sow. I like this new garden hat. It suits me just fine.
Be kind to yourself.
National Invisible Chronic Illness Awareness Week is important to me because it is a week for those of us living with Invisible Illness to be motivated by the wonderful selection of speakers, along with it being a week for us to model the type of behavior to those who dont understand about Invisible Illness in the same manner that WE would like to be treated. By providing positive information, awareness and behaviors to others, it paves the way for hope, hope for a cure for what ails us, but hope that we can positively educate other about Invisible Illness.
Marybeth Lonnee says, “I was diagnosed at age 16 in 1971 with Crohn’s. I have had 3 bowel resections, 8 kidney stone surgeries, and have many other health issues including RA, Fibromyalgia, Sleep Apnea, Gastric Reflux, Mennieres Disease, Anyeurisma, Hypothyroidism, RLS, and Ostoearthritis, Depression and panic and anxiety. I was a support group leader for the CCFA back in the early 80′s as well as president of the Minnesota Chapter. I had to go on medical disibility in March of 2000. I am on social security disibility. I have tried to live my life as proactively as possible and am currently writing a book based on my experiences living with long term chronic illness. When I am not writing I can be found out in my garden. I am forever optomistic, even after almost 37 years, that a cause and then a cure will be found.”
Read Full Post | Make a Comment ( 5 so far )GUEST BLOGGER: Reaching Out To Others Even When We Need the Encouragement
Everyone I have ever met with chronic illness has a desperate need to be understood, believed, cared for and cared about. This is especially true when the illness is invisible to everyone else, except for those moments when some physical evidence shows up, like a rash.
Since it is not possible to show everyone the rashes, which have a nasty way of waiting until no one else is around anyway, the only thing left to do is to become your own best friend. I am serious about this.
First, have a list of things you would love for someone to do for you. For example, I wish someone would make me a pot of tea, play some music I love and listen to me, really listen to me. Well, today I am going to be that friend for myself. The tea is ready, Beethoven is pouring out of the speakers, and I am prepared to listen to myself – as a true friend would do. That means I have to be critical in a surgical way, a nurse to myself.
Since listening would give me the giggles, and interrupt Beethoven, I will write my comments to myself and then step in as a friend. For example, I feel that nothing nice has been done for me or has happened to me for a long time. My friend side responds, it is a quote I love but cannot recall who said it, “Really, think of all the things you did NOT want that did not happen to you!
Take a moment to be grateful for that. Then think of all you do have, besides the tea and music. And, if you were honest instead of feeling sorry for yourself, you would think of [someone else - do you have a name of someone YOU know?] who is suffering right this minute and needs tea, music and friendship more than you do. Why don’t you go and see to that person?”
Somehow, the minute you are able to put your mind and heart on the needs of someone else, even if their pain or problem is less than yours, your own pain is reduced. It is as though there is only so much hurt that can enter and you displace some of your own when you feel another’s.
Please try this; it is so simple but it has never failed me. Yes, first see to you: Do what you can to bring yourself a smile, a moment of pleasure, and then invite in that critical friend to remind you that while you may be in hell, you do not have to stay there – that story of the starving people whose hands were secured in front of them so they were unable to reach the food they had been served, the whole table of people described as hell; then one person reaches across and puts food in another’s mouth and the table is now heaven.
National Invisible Chronic Illness Awareness Week is a moment of hope for the ill to better learn how to live with chronic illness.
Leslie Royce is a 72-year-old retired Philadelphian who lives in the center of Philadelphia in spite of MCS. She does this in order to be part of her children’s lives, and in order to be available to those who need help and encouragement. She knows how lucky she is to be alive and therefore the theme of her life is celebrate. Read, write, celebrate, and share is how she survives.
Read Full Post | Make a Comment ( 4 so far )GUEST BLOGGER: Am I a hypochondriac?
I had a brush with my old friend hypochondria recently. But Mark Levine’s recent New York magazine article “Listening to Hypochondria” left me feeling secure that I’m not a hypochondriac, and hopeful for folks who really are. Allow me to explain:
Second nature
I grew up in a family of hypochondriacs. Without naming names, I’m comfortable saying that family members both close and far experienced rare and incurable illnesses and maladies, sharing all the gorey details and freaking out all us kids at family reunions. You name it, folks were sure they had it: HIV, hemophilia, Legionnaires Disease—totally freaky stuff.
The problem was, as I got older, it was hard to tell if these experiences were real. Certain people were “cured” of certain illnesses that were—and still are—technically and completely incurable. And even though I was told I had “a touch of hemophilia” I lived through multiple bloody falls from bikes and swing sets and stuff, some I didn’t even tell my parents about.
I didn’t want to question my family members; I wanted to believe them, to help and support them. But at times the claims were so out there, it was hard to take them seriously. To complicate matters, they often also had REAL health claims, which needed to be taken seriously. It was really confusing!
Hypochondria…or not…or yes…oh, who knows?
Eventually I learned to tune out a lot of it and hope they knew how to take care of themselves. And when I learned the term “hypochondria” in college, I felt a strong sense of recognition. So THIS was the reason I was so fixated on my body and its every bump and wrinkle; I had absorbed some of my family’s hypochondria myself. I made the decision right then to chill out about my body, and that lasted for a few years until…
…I was diagnosed with fibromyalgia in 1997, after months of mysterious symptoms and a battery of tests, almost all with negative results. I was perplexed, frustrated and scared. Suddenly every cough and rash and pain just might mean something. I started cataloging my symptoms (per my doctors’ orders) and it became an obsession.
Those few years in which I was obsessed with my body were exhausting. When you’re convinced that you MUST have something serious that the docs just haven’t confirmed yet, it’s hard to concentrate on anything else. I was at the doctor every week, and he patiently explained over and over that I was obsessing and I needed to step back and get perspective.
The 24-hour rule
A day at the therapist’s office was a big turning point: She explained that it’s common for people with hard-to-diagnose chronic illnesses (like fibromyalgia, chronic fatigue syndrome, multiple sclerosis and lupus) to become a bit obsessive after a diagnosis. After months (for some people, years) of living with undiagnosed illness and dealing with mysterious symptoms, everything seems to hold hidden meaning. It makes sense, but it’s not healthy.
Slowly she talked me off the ledge and got my mind focused elsewhere. We even developed a 24-hour rule: if a symptom lasted more than 24 hours, THEN I was allowed to call my primary care physician about it. That rule cut my doctor appoints down to almost nothing. Turns out, obsessing over possible diseases was making me feel worse; directing my mind elsewhere allowed me to calm down and help me get real.
So while I learned I’m not really a hypochondriac, I definitely have obsessive tendencies that need to be monitored, especially when I’m feeling really bad physically or emotionally. The 24-hour rule stays in place.
Fall-down-go-boom offers new perspective
It had been a while since I doubted my ability to assess symptoms, and then I fell down some stairs with my bike a couple days ago, banging myself up pretty good. My right hand and arm hurt a lot, and I had x-rays taken because I feared a fracture. (A pal recently fell down and resisted medical care, but once he got it he learned he had a fracture, so he was on my mind.)
When the x-rays came back negative, my old habits returned in full force. Why did I get them in the first place? Was I over-thinking the pain? Was I obsessing and making it worse? Had I wasted money and energy? Was I being a hypochondriac?
Nope, I decided after a few hours of worrying. I was being proactive. I’ve never broken a bone, so I don’t know what that feels like—I only knew it hurt like a mofo, and I wanted to be sure. That doesn’t make me a hypochondriac; it makes me a normal girl after a bike accident.
And as I sat on my porch that afternoon (my wrist on ice), reading Mark’s piece about hypochondria and new research into its origins and potential treatments, I realized I was OK. Sure, I might occasionally obsess about a weird bump on my arm or a new mole, but that’s pretty normal.
And for folks who struggle with hypochondria, there is new hope for treatment using serotonin-reuptake inhibitors and other forms of therapy, which is great news. Now if only I can get some of my family into one of the new research studies…
Jenni Prokopy is the founder and Editrix of ChronicBabe.com. She reaches thousands of women every day with messages of hope – and teach them how to maintain their sense of self despite health-related limitations. She says, “I love helping others and I know I have a commanding message of hope and inspiration to share.”
Read Full Post | Make a Comment ( 10 so far )GUEST BLOGGER – Invisible Illness: What’s in a Word?
I’m happy to participate in Invisible Week as a guest blogger and seminar presenter this year, and have been thinking a lot about the term “invisible” a lot lately. (What can I say? I am a semantics dork. But you already knew that.)After all, it’s the word “invisible” that sets this whole movement apart, that makes an enormous difference to the many, many patients who live with diseases they feel but others cannot see.
Though the absence of outward physical manifestation of illness in no way negates the existence of illness, the world doesn’t always work like that, and that’s where the stories so universal to the invisible illness experience originate: the stares and comments when a “healthy-looking” person uses a handicapped placard; the judgments and whispers in stores or other public places when people do not move as quickly or efficiently as they look like they should be able to; the insinuations patients are lazy or malingering because they are not cured and “don’t look sick.”
This is the part of invisible illness that is challenging, these preconceived benchmarks of what healthy and sick look like that are impossible to meet, these public expectations that are harder to reach when many physical complications stand in the way. I know I’ve felt uncomfortable when I’ve had to walk slowly because of adrenal fatigue or when I’ve had to take the elevator up one floor when I’ve had a respiratory infection and haven’t been able to move enough air to climb stairs. I don’t want people to think I am simply out of shape, or too lazy to walk up a flight of stairs.
(And yet I assume they are noticing or caring, so really, whose problem is it?)
I wish it didn’t matter so much what the average stranger, however misguided or misinformed or plain old misanthropic, thinks or assumes, but it does. Who wants to be judged, criticized, or somehow invalidated?
But there’s more this invisible illness phenomenon, something I touched on in last year’s post on
Seeing the Scope of Invisible Illness–the cloak of invisibility has its benefits. It gives us a space to identify ourselves as something other than patients, a space where we don’t have to discuss, defend, or define conditions. We can be just like everyone else, if even for a brief spell. We can keep our problems and complications private.I guess the timing of this post on invisible illness is particularly compelling for me because I’m caught in between the seen and unseen. I’m temporarily wearing monitors and devices that are very much visible, that lay bare to everyone around me what’s going on inside of me whether I like it or not—and it’s a definite “not.” (And yet I am assuming they are noticing or caring, so really, whose problem is it?)
It’s the same feeling I’ve had when being wheeled onto an ambulance in front of a college dorm or being pushed through an airport in a wheelchair. Feeling that vulnerable and exposed is, in my experience, just as uncomfortable as feeling criticized or judged for not “looking” sick enough.
So in the end, parsing out the implications of invisible illness leads me another equally powerful word:
Understanding.
It’s what we need from others when our reality doesn’t match their assumptions, and it’s what we need to remember to extend even when in short supply because, as we know too well, you never know the truth of someone’s situation from a sidelong glance.
Invisible Chronic Illness Awareness Week is important because you can never be “too young” to be sick!
Laurie Edwards is a lifelong patient with multiple chronic illnesses. She is a health journalist and author of the newly published Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties (Walker), and runs the award-winning health blog www.AChronicDose.com. She has a BA from Georgetown University, an MFA in Nonfiction Writing from Emerson College, and teaches advanced writing for the health professions.
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