If you’ve ever heard anyone say, “You don’t look sick,” while you are battling the pain and fear of a chronic illness you know what Invisible Illness means. September 28th through October 4th is one week in the year specifically focusing on the challenges of having a serious condition that no one easily sees.
Check out the wonderful Invisible Illness Week website for a treasure chest of resources, inspiring, useful and commiserating. Pass it on to friends and family!
And you’ve got to see this, too, What You Say To Someone With Chronic Pain And What They Hear, by Lara Parker and Charlotte Gomez on Buzzfeed. It’s funny and dismayingly accurate at the same time.
Related Post: 10 Things To Say To A Sick Friend
Come to an inspiring, informative talk about what it’s like to live with chronic illness and what we can do to thrive despite it!
When? This Thursday, July 18th, starting at 7:00 PM and ending promptly at 8:30 PM (because we all need our beauty sleep).
Everyone is welcome! Bring your sense of humor and your wisdom. If you can give me a call to RSVP (716.308.6683) that would be great but if you can’t, well, please come anyway.
We will meet at the Explore What’s Next Offices at 1416 Sweet Home Road, Suite 3 Amherst, NY 14228. Get directions by clicking here! Look for the Explore What’s Next sign right out side the door.
Expect an open discussion where I believe I will learn as much from you as you will from me! To give you a sample of what I look forward to sharing with you, please check out the articles under the EWN blog category Chronic Illness by clicking here.
I look forward to meeting you all!
1416 Sweet Home Road, Suite 3 Amherst, NY 14228
This talk is for you, a friend, a caregiver, anyone touched with illness that won’t go away.
This won’t be a lecture. Instead, I hope to lead a lively, inspiring conversation about how we all can manage to live well emotionally despite the ups and downs of chronic illness.
I will share my story, resources and the Seven Rules that I’ve learned along the way that help me get through.
There will be no charge for this event!
RSVP: Let me know that you plan to be there either by calling me at 716.308.6683 or emailing me at firstname.lastname@example.org by July 16th. I want to be sure I have enough chairs for everybody.
*We are wheelchair accessible!
I didn’t know what to expect, I was afraid it would be something awful like that Mel Gibson movie “What Women Want” where a sexist man could read women’s minds. Ick.
But this video blew my mind in its direct simplicity. Not a word is spoken. The quote from Plato above was taken from the first comment to the video on YouTube. Among the gifts I feel my chronic illness gave me was the understanding that a person can look perfectly fine on the outside while dealing with incredible pain both physical and emotional on the inside.
This little film does that one better. It includes a complexity of conditions: from sadness and grief to elation and joy. What we think people should be burdened with can be very different from what is actually weighing on them or lifting them up. See it for yourself.
♥ All about women and heart disease – our #1 killer – from the unique perspective of Carolyn Thomas, a Mayo Clinic-trained heart attack survivor
♥ Information for the general public, heart patients or their family members, health professionals, and all students of the heart.
A few weeks ago I ran into a friend at the barn where I keep Annie, my mare. We hadn’t seen each other in a while so we caught up. I told her about my slow, but good, recovery from illness and she told me about caring for her ninety-three year old mother who lives in a nursing home. I said I hoped she, my friend, was taking care of herself as well and she responded that all her friends tell her that but she doesn’t see how that’s possible in some situations.
Even when my friend is dead tired, she works outside the home, still visits her mother, plays cards or bingo with her, makes sure she has what she needs, drives her to appointments. My friend says, the interesting thing is, she IS dead tired after work but when she sits with her mom she doesn’t feel tired. Afterwards, she’s tired again, but there, in that moment, she’s fine. NOT caring for her mother would be more stressful. In visiting her she does what she feels she needs to do for them both and from some unknown place, the energy appears.Read More...
Here’s the thing about chronic illness… It’s CHRONIC! That means it doesn’t have the courtesy to go away, even for a minute.
Many of us are dealing with the winter storm that hit the Deep North yesterday. As much as it laid us low we know there will be a Spring and then a Summer. That fact makes this burden a little more bearable.
With chronic illness we need to make our own little moments of Spring and Summer because the illness often doesn’t give them to us. The beauty of the sunlight after the storm, the pleasure of the taste of hot cocoa, the feel of a soft warm blanket. They sound like little things, they are, but they build and fill our hearts with light.
My friend and fellow blogger Carolyn Thomas, whose wonderful website Heart Sisters, all about women with heart disease, has won awards for being among the top ten online influencers. Carolyn, a heart attack survivor who lives with heart disease, left this great comment in response to my article When Asked, Don’t Panic: Just Say “I’ll think about it.” Then say No. With her permission I am sharing her comment with you here. The bold emphasis is my own.
This [article] is a fantastic reminder that “NO!” is a complete sentence.
Yet I’ve spent much of my adult life saying YES! to things that I didn’t really want to do. For example, many years ago, I realized that I was letting other people dictate my social calendar. When they asked “Are you free on Friday?” for example, I’d say “YES!” if my calendar happened to be blank on that particular date/time, and before you know it, I was on my way to something I didn’t really feel like going to, often with people I didn’t really feel like being with. How on earth did I let this happen?
Then somebody gave me this wise advice: on your purse calendar, the week-at-a-glance kind, write the word “NO!” on the top of each page. Then, when somebody asks “Are you free on Friday?” you simply say “I don’t know – let me check my calendar” – and there in big bold caps you find the word “NO!” Doesn’t mean you must say NO! to everything, of course, but it’s a useful reminder simply to pause and ask if this demand on your time is what really works for you right now.
This must have been about the same time I decided that from then on, I was only going to volunteer in beautiful places.
That decision came after decades of serving on steering committees and boards of directors and event planning groups (if you’re a PR person, every organization wants you on their volunteer team!) But this always meant more meetings (often evening meetings, after a long day at work filled with meetings!) But in general, I HATE MEETINGS! So why was I voluntarily sacrificing any of the very precious few leisure hours I have left on this earth by saying YES to more meetings? Duh….
That was the year I first started volunteering at a lovely heritage garden as a tour guide, where at the end of every crazy-busy week, I got to spend a few hours in a quiet and spectacularly gorgeous piece of nature, meet people from all over the world, and share the fascinating history of the gardens.
I still continued to receive regular requests for my volunteer time on boards and committees, but just asking myself “Is this a beautiful place?” meant it became a whole lot easier to say “NO!” if the demand on my time didn’t meet that one simple criterion.
Thanks again for sharing such timely and wise anecdotes to powerfully prove a point.
Photo courtesy ukgardenphotos via Flickr
A short synopsis: “A mysterious medical ailment leads to a terrifying–and darkly hilarious–brush with death.”
Having lived through my share of “mysterious medical ailments” I can vouch for the authenticity of Borowitz’s story. From the uneasy feeling of trusting your guts, much less your life, to a doctor you’ve never met before, to the ridiculousness of the 0-10 pain scale. “TEN! Motherf*&%er!!!”
Borowitz is brilliant at using unsentimental, sharp humor to describe how illness, sudden, painful illness, gives equal parts humiliation and gratitude.
Plus it’s a love story!
Just 99 cents. You can grab a blanky, curl up on the sofa and read it in one cozy winter’s afternoon like I did.
Ever since the relapse of my kidney disease I’ve struggled with depression, with the close to twenty pounds I’ve gained because of the medication I have to take and fatigue. This relapse brings back the memory of all recurrences of the disease from the past and that’s a bummer. But I don’t have to worry about sudden death.
Not so for thousands of people who live with the memory of surviving a heart attack. A study reported by Tara Parker-Pope in today’s New York Times sheds light on what many of us in the behavioral health field have known anecdotally for a while. A significant number of people who have experienced a sudden cardiac event develop symptoms of post-traumatic stress disorder (PTSD).
It makes perfect sense. My first job as a newly minted psychologist was at Mt Sinai Medical Center in Manhattan where we studied and treated post-stroke depression. A stroke is another kind of “attack.” The survivors fought hard to recover from the physical effects but often overlooked how the experience was effecting them emotionally.
Both the study I was a part of many years ago and this more recent one out of Columbia University Medical Center, suggest that the presence of PTSD symptoms can contribute to poor disease management, like not taking medication because taking it every day provokes strong negative feelings like anger, sadness, and underneath it all, fear: “I hate that I have to take this pill because it just reminds me of how fragile I am.”
Hypervigilance, can also be a problem. Those of us who live with chronic conditions that go in and out of remission fight with the ghost of hypochondria. Every little twinge, every little pain is like a sudden loud sound for a combat veteran. “Is it happening again?” is a life and death question for heart attack, cancer and stoke survivors.
All this stress, sleep problems, anxiety, without proper diagnosis and treatment, may lead to the very thing cardiac patients wish to avoid, another heart attack. PTSD and depression probably also contributes to slower recovery as we found in our post-stroke depression study.
The good news is that PTSD is treatable with good psychotherapy and if needed, anti-depressant medication. If you or someone you know is having a hard time coping with life after a heart attack, or any life threatening sudden event please reach out to a good therapist. You can always call or email me.
Read more at Carolyn Thomas’s Heart Sisters: Not just for soldiers anymore: Post-Traumatic Stress Disorder after a heart attack.
Photo courtesy Sofia Francesca Photography
“I think this is one of the most toxic New Age ideas: that all patients should keep a positive attitude. What a crazy, crazy idea that is! It is much healthier, much more healing, to allow yourself to feel whatever it is that comes up in you, and to allow yourself to express it. Allow yourself to work with the anxiety, the depression, the grief.”
~Dr. Michael Lerner
My friend Carolyn Thomas, a heart attack survivor and founder of Heart Sisters, wrote this great article, A Heart Patient’s Positive Attitude: A “crazy, crazy idea”?
It’s about how we can be our greatest enemy by insisting on staying “positive” when the world is literally crashing down around us. She does me the honor of being among the professionals and experts she quotes. Read it! You’ll laugh and cry and laugh again – it’s that good.