b'ing stigma-free

Helping hand caregivers

Caregiving has many faces. Family caregivers range from the parents of children with special needs, to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. But despite considerable gains in public visibility of family caregivers, many continue to experience stigma, and struggle to maintain their own health and well-being.

Caregiving is a national phenomenon. It will only increase in prominence in the future. The population of 35 million elders will double by 2030. So the number of people who need eldercare will continue to grow rapidly as the population ages. The number of adult children caring for a parent has tripled over just the past 15 years.

Find Strength in Numbers

If you are a family caregiver yourself, the fact is you are not alone. Look around – statistically, two out of every five adult Americans are family caregivers – that’s tens of millions of family caregivers across the country. You probably know someone who is caring for an elderly mother with Alzheimer’s, or a child with autism, or a partner with cancer. You have strength in numbers and help is never far away. Even caregivers of those with rare diseases can find connectedness: An estimated 350 million people worldwide suffer from rare diseases – including 30 million in the U.S. and another 30 million in Europe.

It’s never too early to begin a conversation with your friends or other caregivers. Exchange ideas on caregiving and use your friends and fellow caregivers to create a support system. Talk openly with your friends about your caregiving challenges. You will probably find that they can sympathize or know someone else in your situation – and they may even be caring for someone, too! Nearly everyone will be a caregiver at some point in his or her life. It’s nearly as certain as death and taxes.

Recognize the Burden

Caregivers endure stress caring for their loved ones. Feelings of shame about certain illnesses contribute to caregiver burden, and negatively impact caregiver functioning and wellness. This is compounded as both the ill person and the caregiver experience the stigma. Some caregivers may face discrimination, frequently at work. Others may experience social exclusion. Often stigma is strongly associated with negative stereotypes of older people and characteristics of chronic illnesses. This reinforces the importance of support for caregivers.

Data show that there are significant costs of caregiving. For instance, those who work while fulfilling their family caregiving responsibilities have a higher incidence of major health conditions (such as depression, hypertension, and diabetes) than non-caregivers – directly as a result of the stress from their caregiving challenges. And ignoring their own health (sleeping, eating, exercising, visiting a doctor) further undermines caregivers’ health. Caregiver stress can erode the immune system and actually increase susceptibility to illness.

Caregiving can feel like an emotional rollercoaster. Many family caregivers feel overwhelmed, and experience feelings of anger, depression, and guilt. All these feelings are normal. And for many people caregiving can ultimately be one of the most rewarding experiences of their lives! To be successful, support from friends and family is needed.

The journey to caregiving sometimes starts slowly – when a spouse is diagnosed with ALS (Lou Gehrig’s disease), or a child develops a mental illness. Maybe it happens all of a sudden – when a child is born with Tay-Sachs or a parent has a stroke. However it began, there are millions of caregivers facing challenges and needing support.

Help is the most important step, but admittedly it is not always easy. The very symptoms of depression, such as lethargy and hopelessness, can rob one of the will to seek help. Embarrassed by the stigma of depression, and simply denying that anything is wrong, the caregiver may retreat into isolation. These can all keep one from taking that most important first step – offering, and accepting, help.

 

 

John Schall hi resJohn Schall is CEO of the non-profit Caregiver Action Network (CAN). Based in Washington, DC, CAN works tirelessly to advance resourcefulness and respect for family caregivers across the country. CAN’s free educational resources assist in learning to develop effective caregiving coping skills. CAN has tips and tools that can help caregivers avoid burnout and stay healthy themselves while caring for their loved ones.

CAN recommends that caregivers:

  • – Seek support from family and friends.
  • – Accept offers of help and suggest specific things people can do to help.
  • – Learn how to communicate effectively with doctors.
  • – Take respite breaks often.
  • – Watch out for signs of depression and don’t delay in getting professional help when they need it.

Connecting caregivers to one another is also vitally important because caregivers need to know that they are not alone. CAN maintains the Family Caregiver Forum so caregivers can connect and help each other. This online forum is a safe place where any caregiver can ask a question of others dealing with similar circumstances and get thoughtful and helpful responses.

So if you need help managing any of the many challenges that come from caregiving – such as isolation, feelings of anger or depression, or communicating with doctors – feel free to check out CAN’s free resources at CaregiverAction.org. And if you are a patient who relies on a family member for help, do them a favor and send them to CAN’s resources because they need someone to lean on, too!


Breast cancer ribbonI had a mastectomy when I was 29 years old. The year was 1972, the height of the sexual revolution. I was a single career woman living in New York City and spending summers frolicking on the beach in the tony Hamptons. It was also a time when the “C” word was whispered behind closed doors. People with cancer were pariahs, sometimes fired or not hired because of it.

After my gynecologist told me the tiny pea sized lump in my breast was nothing to worry about, I got a second opinion from Strang Cancer Prevention Center. “You need a biopsy done in the hospital,” the doctor said, “not a needle biopsy which can be unreliable.”

The year was 1972, a time when the “C” word was whispered.

The biopsy was positive. Two weeks later, I had a mastectomy. Afterwards, I felt ugly, odd, freaky. These are the words that lived inside my head as I tried to navigate the social scene. People in their twenties and thirties were looking for physical perfection and I was damaged. At some point, I’d have to tell that there was only one breast where there should have been two.

Jump ahead to 2012. My husband and I attend a fundraiser for Moms Who Kick, Inc., an organization that supports breast cancer research and women’s health. This year they produce a calendar with twelve women in excellent physical condition who have been touched by cancer. The event, a fashion show, features the women appearing in the calendar. Our niece, Jen, is Miss September.

The women strut like proud peacocks on the catwalk, vogue for the audience, then turn for the return trip up the runway. They wear anything decollete – strapless, backless, and plunging – all sexy fashions that belie that most are missing at least one of their original breasts. They flaunt their bodies like beauty queens. It seems breast cancer is the new ‘in thing,’ taking the place of the latest Louis Vuitton handbag.

When I had breast cancer it was a lonely disease. 

When I had breast cancer it was a lonely disease. Doctors and patients did not talk about the operation’s psychological and emotional toll. And, there were no support groups for women to attend.

The breast doctor who looked at my slides from the biopsy said “it is the best kind of cancer to have.” In today’s world, that would mean having a lumpectomy for carcinoma in situ (CIS), a type of contained cancer that has not spread to other cells. The response to breast cancer back then was as radical as the radical he prescribed. I could have had a less invasive procedure called a simple mastectomy, but it was so new there were no survival statistics. I opted for the procedure that would grant me the longest life.

Today, depending on the diagnosis, women have a choice of a lumpectomy which removes a tumor and extra tissue or a mastectomy, most of which are not as severe as the one I had.

It seems breast cancer is the new ‘in thing,’ taking the place of the latest Louis Vuitton handbag.

Forty four years ago, reconstructive surgery was not available so a woman who had a mastectomy was left with one breast and a prosthesis that fooled the world into thinking she had two. A woman today can come out of anesthesia with a new breast in place, be it an implant or other method of reconstruction such as using tissue and muscle from another part of her body. She does not have to look in the mirror and see nothing where there should be a mound of lovely soft sensitive flesh.

Still cancer is cancer. Hearing the doctor say those three little words, “You have cancer,” is as terrifying today as it was then.

I envy Jen and her forty-something comrades. Aside from benefitting from the advances made in treating breast cancer, they have a cancer community. They can talk about whether they need a single or a double, chemo or radiation, how their husbands and kids are coping, but most of all, they can talk about being scared.

 

Leslie Jay-Gould ’s career in public relations ironically included working for Penthouse magazine, along with stints in the film industry. Her work has appeared in The New York Times and as an Editors’ Pick on Open Salon. She is a 44-year cancer survivor and lives in Somers, NY with her husband.

 

 

 

 

 

 

 

 

 


 

70s_station wagon

When I was five, my family moved from the state of Washington to Florida, where my dad had taken a temporary position at the Naval facility at Cape Canaveral. My parents opted to make the trip by car, sending our belongings on ahead. Not only did my poor parents choose to embark on a road trip with three children under the age of ten, but they also extended the distance by using it as an opportunity to visit friends and relatives as well as national parks, amusement parks and historic landmarks. We traveled from Washington to Arizona, then across to New Hampshire then down to Florida, traversing the country in the shape of a very big Z. Then they did it again two years later when we moved back to Washington. I celebrated my 8th birthday in New Hampshire at my grandparents’ home.

Why does this matter? Well, I was along for the ride, and I have an asymmetrical face. You know, the kind of face people notice. The kind other kids stare and point at. Yet my parents had no hesitation about taking me out into the world, and for that I am extremely grateful.

I was born with a fast-growing tumor protruding from the left side of my face. In order to remove it completely so it wouldn’t grow back, the surgeons had to also remove bone, nerve and muscle, essentially leaving the left half of my face paralyzed. While a number of reconstructive and cosmetic surgeries helped, they failed to give me the “normal” face I so desperately sought in my youth. I have since come to realize that such a face for me is impossible, in part because when the face is involved, it takes such a small amount of difference for people to notice that something is “off.”

My parents had no hesitation about taking me out into the world

Sure, I was teased, and occasionally bullied, but I refused to allow having a different face to ruin my life. I focused on and improved my talents, and came to discover that there was plenty more to me than my lopsided visage.

One thing I am passionate about is helping people overcome their fear of going out into the world because they are concerned about how others will react to their difference, regardless of what that difference might be. There are people who isolate themselves, hiding in their homes and behind their computers. Even those with jobs keep their world very small, limiting their interactions and avoiding socializing. Yet there is no reason to perpetuate such loneliness.

If you are someone who is uncomfortable venturing out on your own for whatever reason, start by going out with a friend or family member. Try attending a movie, where it’s dark and most people have their backs to you. Restaurants are good because people will focus mostly on eating rather than on other patrons. When you start to branch out, choose events you are really interested in, because the other people in attendance will mostly share that interest and that will be the focus instead of you. I met my husband because I volunteered to do technical work for community theater, and we’ve now been married over twenty years.

I have learned that if you expect to be treated like anyone else, then that is generally how people will treat you. If you expect that everyone will stare at you, that is what you will see, whether that is the reality or not. In the movie Deadpool, the main character had his appearance radically altered, including his face. During one scene, he walks down a public street for the first time since his alteration, and everyone is staring at him. I’m in my theater seat getting angry, thinking people don’t really do that! Later, it occurred to me that the scene in the movie was portraying his perception. But people with physical differences are fooling themselves if we believe that people aren’t supposed to notice. Of course they will – I notice other people who have physical differences. It’s what both parties choose to do from there that matters.

Some people will stare, sometimes without even realizing it, and kids will point and ask the adult they are with what happened. Curiosity is normal, but there is never an excuse for being rude. Rude behavior might include continuing to stare, laughing, making comments, bringing someone else’s attention to a person who is different, or not addressing that person directly (making assumptions that they cannot speak for themselves).

If you expect to be treated like anyone else, then that is generally how people will treat you

Children should be encouraged to politely ask the person directly about their difference, because that teaches them not to be afraid of someone who is different and also helps humanize that person. Adults accompanying a curious child should never assume or make up an answer.

My usual response if I catch some staring at me is to smile, wave, and maybe say “hi.” Sometimes I invite a child to ask me about my face. Engaging in a positive and friendly way not only diffuses a potentially unpleasant situation, but also points out that I am just a person. I generally don’t mind if someone asks me about my face, as long as they do so in a polite and respectful manner, but not everyone is of the same mindset. Not everyone feels that it is their responsibility to educate.

For people who fear reactions to their visible difference, learning how to be out in the world takes time.

I’m not suggesting you ever get used to the way others react to you, but over time it is likely you will notice it less. People I’m with will tell me “that guy is staring at you” and I’ll respond, honestly but without looking “really? I hadn’t noticed.”

People call me brave for putting myself “on display” to the rest of the world, but that’s not how I see myself. I go out and live my life, because the alternative is unthinkable. I believe that the more of us who have some sort of visible difference are out and about in the world, the more commonplace we will become and the less we will be treated like something unnatural or strange. And the better our quality of life for going out and experiencing new things.

Personally, I can’t imagine NOT going out into the world. How limited my life would be if I denied myself such experiences as going to movies, out to dinner, traveling, and going to rock concerts. No one should deny themselves doing what they enjoy just because they are worried about what other people think. After all, that’s the other person’s problem! Go forth and live!

 


Dawn ShawAuthor and professional motivational speaker Dawn Shaw understands adversity and embodies resilience, which she believes is the key to bully-resistance. She was born with a rare tumor, the removal of which left her face half paralyzed, so she grew up looking “different.” Despite the insecurities and unfair treatment this sometimes brings, she learned to accept and even embrace her difference and lives a happy and productive life. Her inspiring memoir
Facing Up to It, published in early 2013, shares her stories and experiences during her challenging journey to confidence and self-acceptance. Her second book, a Kindle exclusive titled Friending the Mirror; Changing How You See Your Reflection, is a guide to finding beauty through happiness. Her third and most recent book, Facial Shift; Adjusting to an Altered Appearance, assures the reader that even though their physical appearance may have changed, they can still live happy and productive lives.

Dawn currently hosts an online video series, also titled Friending the Mirror, in which guests educate and share their personal stories about appearance-related issues and insecurities, disabilities, and physical differences. She has taken her inspiring message to television by agreeing to appear on an episode of the Discovery Channel’s Body Bizarre, which will air later in 2016. When not writing or speaking to youth or adult groups about such topics as developing resilience, not allowing “what others think” to unduly affect decisions, and how to make yourself attractive regardless of your looks, Dawn indulges in her affinity for live music, attending concerts primarily by independent rock bands with Ian, her husband of over 20 years. She also runs a small Icelandic horse farm in Grapeview, Washington, which is home to several well-loved cats and dogs and an ever-changing number of Icelandic horses. For more information on Dawn including information on ordering her books or booking her as a speaker, visit www.facinguptoit.com. You can also find her on Facebook and on Twitter @facinguptoit.

 


 

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