Valentine’s Day is fast approaching, and with it, and influx of pink and red heart decorations. While we hope they remind you of someone you love, WEGO Health can’t also help but hope that they get you thinking about your own heart health. This Valentine’s season, WEGO Health is promoting awareness of a lesser known heart problem, Congenital Heart Defects (CHD).
Did you know that Congenital Heart Defects (CHD) are the #1 birth defect worldwide? And though nearly twice as many children in the US die from CHD than all forms of childhood cancers combined, funding for CHD research is dramatically lower. Isabelle Ouimette, the Chapter Director of It’s My Heart, took some time to share her experience as CHD Health Activist and what inspires her about her community.
WEGO Health: Can you tell us a little bit about your background and why you became an advocate for the CHD community? What made you get involved in the first place?
Isabelle: I was 24 weeks into my pregnancy when I received a phone call from my OB/GYN that there was something not quite right with my baby’s heart, his right side of the heart was enlarged. It was one of the most devastating days of my life thinking what I could have done to prevent this. The next thing I knew was that I was heading to a Boston hospital twice a week from ultrasounds and fetal echocardiograms. Two weeks after the initial shock, I realized that life with my new born son would not be what I had once imagined and I didn’t know how I would deal with so many unknowns. My son, Andre, was born in May 2008 weighing a 8 ¼ lb and looked like a healthy baby boy but only for a few minutes. He had to be rushed to the NICU because he was lacking of oxygen very fast. It was then that the final diagnosis came in; he was born with critical pulmonary stenosis, dysplastic tricuspid valve and an enlarged right atrium. His journey was far from over. He was too little for a treatment to be admitted therefore we were in a wait-and see mode for the next 6 weeks of his life, with a trip into Boston for a weekly echocardiogram. At 6 weeks old, our family was told that Andre might not survive but they will do their best to save him. What should have taken 3 hours took 6, and it felt like a lifetime. This heart procedure was followed by his first open-heart surgery at 3 months old. His prognosis since then is as good as it can be today, we are learning to live each day at a time in between the 6 months cardiologist follow-up appointments. That is part of our new normal life.
I wanted to get involved to be of support for those going through this journey because it was extremely hard to have to gone through this alone.
WEGO Health: What made you decide to bring your crusade online and get involved with It’s My Heart?
Isabelle: A few months after my son’s surgery I felt that more needed to be done in the CHD community because I was yet to have met anyone else that went through a similar journey besides the families we met within the hospital. My first experience connecting with families online was on a CHD community group at Babycenter.com. There, I used to spend hours sharing words of support and learning from others going through this journey. It also allowed me to connect with families in person who would fly into Boston for life-threatening surgeries to have their little ones. Offline, I felt that there was not enough support for families inside the hospitals we visited. I eventually came across a Houston-based national non-profit organization called It’s My Heart (IMH) http://www.itsmyheart.org, supporting and advocating those affected by Congenital Heart Defect. It was started by a mom whose son had to have a heart transplant and sadly lost his battle at 2 ½ years old. Had his condition been detected earlier, he could have had a better chance at survival. She also found there was not enough resources and support for those going through these terrifying times therefore the foundation of the organization. It was exactly what I was seeking to fulfill with my wish to do more for others going through this traumatic journey. In 2010, I was given the opportunity to become the Boston Chapter President of It’s My Heart. In August 2011 I became the Chapter Director of the national organization now helping to setup and support local chapters across the country.
WEGO Health: What’s the best part about leading your online community?
Isabelle: The best part is that this online community is a great tool for communication and for engaging conversation about various topics revolving CHD. It also allows pertinent information reach its target audience more quickly and effectively. It also helps with raising awareness for the No.1 Birth Defect in America, CHD, when no one is talking much offline.
WEGO Health: What has been your proudest moment as a Health Activist? What has been your most challenging?
Isabelle: My proudest moment was when I held my first It’s My Heart CHD awareness walk in 2011. It was a lot of work to organize such an event but it was all worth it. The most challenging was raising awareness for a cause that no one really talks about; it’s not like cancer which gets a lot of attention because of the awareness set forth over the years. Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for Congenital Heart Defects. It is still an uphill battle but l believe that consistency along with social media will help CHD save more lives followed by more funding greatly needed for ongoing research.
WEGO Health: Is there anything you wish the general public knew about Congenital Heart Defects?
Isabelle: I wish the general public would realize how critical it is to have CHD diagnosed early. Early diagnosis means that treatment can be more effective therefore the survival rate. Too many babies are going home without being properly diagnosed. Too many kids in our schools are not being screened for CHD before it is too late. Too many athletes, sportspeople are in the same situation. There is a small non-invasive device called the Pulse Oxymeter (Pulse Ox) that all doctors’ offices and hospitals have and is not used often enough. It monitors the oxygen saturation in the blood and can detect most heart defects. It is a small device. The cost of not knowing is a lot more.
WEGO Health: How do you raise awareness? What can others do to get involved?
Isabelle: IMH CHD Awareness brochures, online presence on Facebook and Twitter, monthly newsletters, as well as blogging at learnaboutchd.blogspot.com. Others can also get involved by becoming an IMH representative of their community by setting up their own local IMH chapter.
WEGO Health: What next for your community? Where do you see the conversation about CHD headed?
Isabelle: The next thing for the CHD community is to legislate the use of the Pulse Ox in all US States. It can be a lengthy process there are a lot of very dedicated parents who are making big strides in their own state. The hope is to see Pulse Ox become the standard right from birth and in all areas where it should be used for prevent unnecessary tragedy. The groups I also follow online about this work are Pulse Ox Advocacy – http://pulseoxadvocacy.com/ ; 1in100 – http://www.1in100.org; Newborn CHD Coalition – http://newborncoalition.com/
WEGO Health: What do you do when you’re not advocating?
Isabelle: When I am not advocating, I find myself researching on other ways to support and empower families affected by CHD. When I am offline, I love spending time with my family, and homeschooling my 3 year old miracle son who reminds me that every day is such a blessing because he could have easily not been with us today. It is thanks to advanced research, medical talents and early detection of CHD that he is able to be a typical 3 year old today.
Thanks so much to Isabelle for her insight and for her work. Congenital Heart Defect Week is from February 7th – 14th; you can check out It’s My Heart and the great work they do by visiting their website www.itsmyheart.org.
Today we have an interview with an awesome Health Activist – Marla Murasko – who you may recognize from last month’s Advocating For Others webinar. This interview is a look into Marla’s advocacy and hints at our September topic: Working and Health Activism. Marla started her own online community for Mom Entrepreneurs who are also passionate about Special Needs causes. When she’s not focused on Health Activism and caring for her son Jacob, Marla enjoys taking time out to work on her business – another one of her passions. It’s been wonderful getting to know Marla and to hear how became a Health Activist and how she continues to advocate for her son and provide a support network for other working moms.
WEGO Health: Hi Marla, thanks so much for taking the time to share with us. You’re doing so many wonderful things for the Special Needs community and I’m excited to learn more about your work and your passion! Can you tell us a little bit about your background and how you became an advocate for the Special Needs community? What made you get involved in the first place?
Marla: I have always been involved in the special needs community even way back to my high school years. I was a one-on-one buddy for a child with Down Syndrome during my study hall period, volunteered for Special Olympics and was Regional Director for 4 years of the Somerset County Tournament of Champions. So my passion for helping children with special needs started a long time ago.
However, since the birth of my child 5 ½ years ago, who was diagnosed when I was 4 months pregnant with a congenital heart defect and then diagnosed at birth with Down Syndrome it brought this passion closer to my heart. Now it was my son who I was advocating for, so it got more personal for me.
WEGO Health: Your Health Activism really started with self-education, research, and by becoming an empowered patient – can you tell us more about that? How did you empower yourself and what tips do you have for other women (and men) who may be going through a similar experience?
Marla: My health activism truly began the day my son was born. When my husband and I learned of my son’s heart issue during the ultrasound, we were told that the percentage of him having Down Syndrome due to this diagnosis of his heart was extremely high and the only way to confirm that he would be born with Down Syndrome was to do an amniocentesis. We declined that test for personal beliefs. However, to be respectful of my husband’s wishes to not stress myself out for the remainder of the pregnancy by going online and doing research, I truly waited until he was born. Even after his birth it was still hard to digest the fact that he had DS, I went through a short period of time where I went from denial to grief. Then had the opportunity to have a very personal conversation with a hospital chaplain who helped me to realize that I was going to be my son’s biggest advocate. What I would like to say to parents of special needs children is we all have been there, we all have asked the same questions, why him, why us, what are people going to say. That’s normal, that’s part of the grieving process. But that the greatest gift you can give your child is to advocate, educate and take part in their lives. You are going to be their voice. So become as knowledgeable as you can about their rights, your rights, the diagnosis, treatments, insurance, specialists, etc. The more informed you are, you can make better decisions with regards to the care of your child.
WEGO Health: I know that you wrote a book, Jacob’s Journal – My Journey Home – can you tell us a bit about what inspired you to write it and what advice you’d offer other Health Activists who may want to get involved with writing a book?
Marla: Jacob’s Journal – My Journey Home was created through a journal that I had kept at the hospital, of the information that I was being told by the medical profession, the feelings and experiences I was going through and basically to document Jacob’s journey as he grew and progressed. Initially there wasn’t any intentions of writing a book, but through my journey I felt that the information and experiences I was having may be helpful to other parents and decided to share our journey. I did a lot of research as I documented different medical terms, associations, etc. My only advice about writing a book is be patient and passionate about what you are writing about. It may take a while to finish it may not, but you want it to be genuine.
WEGO Health: How did you get involved with your organization “Special Moms Entrepreneur Club”? What was the idea behind starting it?
Marla: SpecialMoms Entrepreneur Club was created out of a need I felt in the special needs community that wasn’t being addressed. As a mom, business owner, entrepreneur I was involved in a mom entrepreneur online community that provided great business information. But what I realized was that only a handful of these members were mothers of special needs children and business owners as well, so it made it hard for them to be able to relate to my particular situation of managing both. However, I felt that when I joined special needs communities it was hard for them to relate to my needs of support from a business perspective. So without having to go to different communities for both personal and professional information when it comes to being the mother of a special needs child and a business owner, I decided to create my own community that would marry the two together and provide a venue to empower mothers of special needs children to follow their dreams of also becoming business owers.
WEGO Health: What made you take your crusade online? What’s the best part about leading your community?
Marla: The best communities are online. You don’t have to be local to other mothers to find a common bond. You can be from two different states and have the same passions and circumstances, so taking it online just seem like the most naturally way to go.
I love leading my community because I love to empower other women, I love to advocate for the special needs community and what best way to do that but through my community.
WEGO Health: What has been your proudest moment as a Health Activist? What has been your most challenging?
Marla: I think my proudest moment was the completion of my book, becoming a first-time author not many can share that title.
My most challenging has been the public school system, and getting my son in the right educational environment with the right support system to make him successful.
WEGO Health: Is there anything you wish the general public knew about the Down Syndrome or the Special Needs Community?
Marla: That we are parents also, we just may have a few more struggles than most. Engage us, engage our children. The world will truly be a better place if everyone just took the time to understand that our children are not different just beautiful and unique.
WEGO Health: How do you raise awareness? What can others do to get involved?
Marla: I raise awareness through my SpecialMoms Entrepreneur community, blogging, organizations I am involved with from being a member to being on the Board. Just get involved with something you are passionate about.
WEGO Health: What next for your community? What are your goals for your organization and what are you most looking forward to?
Marla: I want my community to grow, that it becomes a true source of reference that is being recommended by individuals, organizations and that businesses want to be acquainted with it because they see it as a valuable tool for the special needs community.
I envision providing workshops, seminars, and creating an online quarterly magazine.
WEGO Health: What do you do when you’re not advocating?
Marla: Besides run my businesses, I enjoy my family. Spending time with them is extremely important to me, creating memorable moments is what it’s all about.
Thanks so much for sharing Marla!
Be sure to check out Marla’s work around the web:
Today we’re excited to share with you an interview with a Health Activist caregiver, parent, author, blogger, and hard-working advocate for another. Adrienne Bashista is active online in numerous different places, co-authored the book Easy to Love but Hard to Raise, writes at a blog of the same name, active in the online ADHD, FASD, and developmental disorder communities. Her mission online, which is reflected wonderfully in this interview, is to be real about the challenges and struggles that come with caring for a child with “invisible” disabilities. I think you’ll enjoy what Adrienne had to say as much as I did, and hopefully learned a thing or two. –Amanda
WEGO Health: What inspired you to become a Health Activist Caregiver? What inspired you to take the next step toward advocating for your child? What inspired you to start your site/book?
Adrienne: Like many (if not all) parents of kids who have special needs, I started my journey simply in search of someone to talk to. Someone like me; someone with a kid like mine. The parents who I met while raising my older, neuro-typical son, have become my best friends. They are great supporters and we share much in common, but when it came to the specialized parenting that my younger son required it eventually became clear to me that they couldn’t relate. The early days of parenting my son – before we really found the medical and therapeutic help we needed – were extremely difficult and stressful and I’m sure it often sounded like I was blowing things out of proportion or that I was complaining too much. Certainly decisions we made about doctors and assessments and therapies were greeted with skepticism. Before the experience of raising a child with a developmental disorder, ADHD, and FASD I would have probably been skeptical, too. My whole world view has changed. Because of this world view change I became desperate to find other people like me; thus my journey to create our book and accompanying blog: Easy to Love but Hard to Raise: Real Parents, Challenging Kids, True Stories.
Kay Marner (the other co-editor) and I came up with the idea for the book because we knew that although it seemed like we were the only people struggling with these parenting issues, that indeed, we were not alone. There were plenty of parents just like us – but where to find them? We felt there needed to be a collection of essay about people who were parenting children who had emotional and neurological difficulties that resulted in behavioral problems. Kids who couldn’t be managed using instinctual parenting methods, or sticker charts, or magical countdowns, or whatever methods worked for kids whose behavior issues weren’t as great as our children’s. The response to our original call for contributions was wonderful: we now have 30 parent-contributors and almost 20 “experts” who helped us with the book, but what’s been even more wonderful is the community we’ve formed through our blog and our Facebook page. Finally I have people around me – even though their proximity is virtual – who have been in my shoes. It’s such a comfort.
WEGO Health: What do you wish others knew about being a Caregiver?
Adrienne: How conflicted we feel on a daily basis. I think it’s easy to portray parents of special needs kids as ‘saints’ or ‘wonderful’ or as doing something that other people can’t do, but in reality we are simply doing what we have to do, like all parents. It’s really easy to feel resentful about all of it, but at the same time it’s completely taboo to be angry about parenting a child with special needs. I love my son with all my heart but he is very, very difficult to parent. That’s the truth of the matter. Being told “I could never do what you do,” makes me angry – both because I think most people rise to the occasion when it comes to their children, but also because it puts me on a pedestal, and that’s an uncomfortable place to be. It’s a lot further to fall.
On the Easy to Love blog as well as the Mom’s View of ADHD blog, where I’m a contributor, I try to be as honest as possible about my experiences. If that makes me sound like an angry, resentful person, then so be it, but hopefully I’m coming across as a human being who’s been put into a difficult situation. And hopefully people can relate.
WEGO Health: How do you maintain balance between being a Caregiver and managing your own health, work, etc.?
Adrienne: Ha ha ha! Balance? What’s that?
Just kidding. Actually, these days my life feels very balanced, although from an outsider’s perspective it may look somewhat skewed because of the choices I’ve made to keep my family life sane. First choice: I quit my job. This was a career in which I’d had 15 years invested and a Master’s Degree…but I couldn’t do it and take care of my family’s needs at the same time. Next choice: we pulled our youngest son (our ‘easy to love’ child) out of school so we could homeschool him. In school he was crashing and burning. It was a real square-peg-round-hole situation and it created all kinds of stress in his life and in ours. The school was not very responsive to his needs so we made the choice not to stay and fight for services – which probably would have been at least 2 more years of his failure and my mental health sacrificed – but to quit.
Both of these decisions made me MORE of a caregiver for our family, but both were the right decisions for us and have resulted in a more harmonious life. As for the rest of it – it gets fit in whenever and wherever it can. Although I quit that full-time out-of-the-house job I still do other paid work, but it’s work that can be done while kids are at playdates or at night or on the fly. And it turns out that doing this work – writing and editing books and blogs and doing PR and marketing for our family business – is rewarding and important in a way that my previous career wasn’t. With increased quality of life comes less stress, with less stress comes better health. So it all works out.
WEGO Health: How has the internet and social media changed the role of a Caregiver?
Adrienne: I’ve only ever cared for my child during the age of social media, so I can only imagine how difficult and isolated parents caring for kids like my son felt without online support. I live in a pretty small town and although I know of support groups for parents like me, they meet an hour away from where we live and only once a month. With our blog and our Facebook page, as well as a couple of other great on-line support groups I belong to, I can post a question and have a range of answers within minutes. I also don’t think I’d know as much as I do about my son’s various diagnoses had it not been for the Internet. FASD, in particular, is something that there’s not much written about, nor is there much support for – online or offline. It’s getting better, but without the internet I’d probably know next to nothing. I predict that social networking will be where advocacy for kids and families impacted by FASD will really take off. I’m excited to be a part of it.
WEGO Health: Anything else you’d like to share?
Adrienne: Just that I’d like to invite anyone reading this who is taking care of a child whose behavior pushes your parenting to the limits on a daily basis to join the conversation at the Easy to Love but Hard to Raise blog and Facebook page. We are looking for guest contributors. The more the merrier!
Thanks so much for sharing with us, Adrienne. Your candid approach to these tough topics is inspiring and no doubt really influences your community in a positive way.
Check out more of Adrienne’s work!
In today’s post, Colin examines an important type of caregiver: the significant other or spousal carer. Health Activists often discuss how important the support of spouses, boyfriends, girlfriends, partners, and loved ones is to your overall well-being. Finding love and support is essential. But illness and health issues add strain to even the most loving relationship. Imagine adding caregiving to the mix. How do spouses provide their loved one with the care they need while finding strength and support of their own? One way is by interacting with the online community and connecting with other caregivers. To learn more, Colin interviews two key members of the Well Spouse Association – an organization that advocates for this group of caregivers – to hear their thoughts on spousal caregiving, caregiver support, and more. –Amanda
by Colin DeMatteis
This week, I had the chance to sit down with a few members of The Well Spouse Association, a large network of support groups tailored to helping spousal caregivers (aka Well Spouses) by creating a community that recognizes a full-time caregiver’s oft-forgotten needs.
I spoke with Terri Corcoran and Larry Bocchiere. Corcoran has been a Well Spouse for nearly 12 years and a Co-Editor of Mainstay: The Well Spouse Association’s quarterly publication that features a collection of member-created and stories. Bocchiere is the current President of WSA and an experienced Well Spouse.
WEGO Health: How did you get involved with the Well Spouse Association?
Terri Corcoran: I am, unfortunately, a Well Spouse. When we married I was 60 and he was 76. A month after I married my husband, he fell down and no one knew why. He was playing golf and he just fell. Then the falls started to become more frequent. He started to have cognitive symptoms that, in retrospect, we could see had been developing for some time.
Larry Bocchiere: My wife has suffered from emphysema for sixteen years. A few years ago she was having a lot of exacerbations: she was in and out of the hospital for four months. She was going to various rehabs, nursing facilities, and hospitals and I was quite honestly at my wits’ end. Fortunately, I found Well Spouse – as many different members do – when I’d kind of reached a low point. I was searching on the Internet for support for spousal caregivers, and I happened upon Well Spouse.
Terri: We found out he has Fragile X-associated tremor/ataxia syndrome (FXTAS). This wasn’t even recognized as a syndrome until 2001. In old age it turns toxic. By the time he was diagnosed he needed full-time care and I stopped working to take care of him. He would fall down and not know that he needed help.
Then in 2005 I just got really, really burnt out and someone told me about the Well Spouse Association. Most caregiver support groups are for people taking care of their parents, but this is different. This is my husband. With your parents, it’s sad to say, but you can kind of predict that they are going to need care as time goes on, but this was man I married. He was part of my day-to-day life.
WEGO Health: What are some of the most common challenges facing members of your community?
Larry : Spousal caregivers face a different paradigm than most others. If you’re caring for an ill child or a parent, you can still go home to your spouse and support network and feel comfortable there. A spousal caregiver doesn’t have that option.
Terri: It’s physically exhausting. These are long-term issues – our members aren’t people who are having surgery and are then going to be okay. These are people in for the long haul. Sometimes you are essentially alone. We call it being a married widow or widower; you go to everything alone. The experience of losing a spouse even though they’re still there. In cases like my husband, where they don’t talk much, or if a spouse has dementia, Well Spouses can end up living either essentially alone or with someone they don’t know anymore
Larry: Often spousal caregivers lose friends. Honest, we’re not contagious. I know it’s sometimes hard to deal with us because we can’t do everything we used to, but friends tend to fall by the wayside. Sometimes family is wonderfully supportive; I have a great sister-in-law with 2 wonderful children. Other times in-laws or children might be in denial, or don’t want to be involved. Others, for their own reasons and their own families, can’t be involved.
Terri: It’s a financial challenge too. If you have to stop working and take care of them it can be very expensive. A lot of couples become impoverished and some couples divorce just to keep some assets1.
Larry: I had to retire early to care for my wife. As an ex-federal employee, unfortunately, I do not qualify for Medicaid. So everything my wife needs that isn’t covered by private insurance is covered by private pay… my wife is not on any drastic medications or any high priced ones, but she does take fifteen medications per day. She’s not on any anti-cancer drugs or any modified genetic drugs; I’m still out of pocket about 15 thousand dollars per year.
WEGO Health: What do caregivers look for in groups like Well Spouse?
Terri: It’s just sharing support. There are a number of [Well Spouses] who are younger and have spouses and children and sometimes parents they care for too. I don’t know how they do it, but we offer suggestions and ways to cope and sources of help. They have access to a whole community of people having the same problems as they are and it helps to share.
Larry: No one knows us like another Well Spouse. That’s why when I attended my first support group meeting and looked into the eyes of five other people and they told me, “hey you’re really normal; the thoughts you’re having are normal,” that helped me to realize I can work through this, I can help my wife.
Terri: The people in care groups turn into your best friends. They understand things. And we even have people whose spouses may have passed away that are called ‘Former Well Spouses.’ They stay with the group and help other Well Spouses work through many of the same issues that they had to work through, whether it’s dealing with burn-out or losing the one they care for. And we can see how they dealt with things; how they are coping and grieving. It can give others strength to know they’re really not alone; others have gone through this before and survived.
WEGO Health: How can Health Activists and bloggers bring that support online?
Terri: Seek them out and listen to them. Invite them to blog about it. We just need anybody who will listen to us. There are a lot of advocacy groups out there too. We try to get the word out about Well Spouse and in turn hope those people will also spread the word. Anybody who is doing any type of advocacy for caregivers in general will be helping.
Larry: I think just by talking about the amount of people there are. There are 7 million of us, counting current and former spousal caregivers, and often they work in anonymity.
Terri: If you know someone who is working as a caregiver, ask them how they are doing. A lot of times doctors and people around the caregiver forget to check on the caregiver as well as the patient. You come to really appreciate a doctor or a friend who remembers to ask how you’re doing or how you are coping.
Larry: Honestly, before I was a caregiver I paid scant attention to people in walkers, wheel chairs, and people needing assistance or parked in handicap spots. I think that it’s a survival mechanism. People tend to overlook that and think, “This could never happen to me.”
Terri: A lot of spouses don’t even realize they are caregivers. It just kind of happens. Your spouse gets sick and you just take care of them and you don’t realize that it is so difficult and it takes a toll on you… When you’re caregiving, you’re stuck in and you’re not communicating. If not for the Internet, other people wouldn’t know about caregiving or the strength it takes to be a spousal caregiver.
Larry: We need help from the government and from agencies that get the word out. To spousal caregivers, you’re not alone, you can find help, and you can find camaraderie. And, in the Internet age, blogs are the best way to reach new and potential beneficiaries in our search.
The Well Spouse Association has been around since well before what we’ve come to call “The Internet Age.” Joann Landers, leader of the Well Spouse support group in Springfield Illinois, has been a spousal caregiver for over 30 years.
“Balancing a full time job, three children and caregiving, I was tired, lonely and afraid. Back then we didn’t have the internet but receiving Well Spouse publications let me know that there were people out there with the same struggles. The Springfield group started when three of us met at a support group for MS that we had taken our husbands to. We complained that there was nothing for us and decided to do something about it. The help, support, and ability to vent was priceless, as it still is today.”
While wrapping up this article, I originally wrote the ending as ‘groups like WSA have become increasingly important as public knowledge of caregiving stress and burnout grows,’ but that is not the case. Although the support groups may be relatively new, the need for support is not.
All caregivers, but especially family caregivers, face the dangerous possibility of losing themselves in the act of caring for another. Their lives become enveloped in their task, and while many can successfully embrace the “new normal” of daily caregiving, few adapt to their new lives with ease.
Contrary to what we expect, becoming a caregiver is not the same as becoming a saint. Too often we expect spouses to become both selfless and invisible: their needs are no longer important, and their wants must be put aside.
Caregivers need not be saints. They cannot be devils, surely, but there is nothing wrong with being human – a fact The Well Spouse Association wants Health Activists, bloggers, and readers to keep in mind.
1 So called “Medicaid Divorces” allow one partner to keep all assets while the other will be declared financially destitute, which allows the “impoverished” partner to qualify for Medicaid. For an excellent account of this, read more at http://www.huffingtonpost.com/hillary-st-pierre/i-considered-a-medicaid-d_b_816668.html
Here is Part Two of my interview with Katie Schwartz, founder of Dear Thyroid. (Click here to read Part One)
Amanda: Dear Thyroid is a different kind of health community and it says so right in the first line of the About page. What made you decide to bring your crusade online?
Katie Schwartz: Being a writer, I have an ongoing love affair with words. I believe that each person (when they are ready) must tell their story in their own words. Our slogan is “Healing our thyroids one letter at a time”. We mean that literally and metaphorically. Write and submit as many letters as it takes. Join our conversations in comments, and on our chat boards.
If we don’t tell our stories, we are doing our respective diseases a huge disservice. We learn from each other. (By we, I mean the collective we.) We tell the medical community what’s not working. We bridge the gap between families and patients. We experience a degree of healing through the realization that someone else has gone through exactly what we have.
To quote Joanna Isbill “Dear Thyroid™ is changing the way we talk about thyroid disease and cancer. We are starting a new conversation using YOUR words.”
Words are the key to all doors, in my opinion. Our community has written hundreds of thousands of powerful words, humorously, irreverently, angrily, sadly and happily. And always, always honestly.
A: What inspired you to create this unique community?
KS: Providing a literary outlet for our community to come together, and write their story on their terms, in as many ways as they wish. That and a desperate, burning passion for change. We deserve better. Too many doctors treat thyroid disease like a ‘no brainer’, akin to the flu. We empower each other, to become our own patient advocates, to change the way we communicate with our doctors, our families, our friends and each other. We have guest bloggers, some are doctors, others are health advocates, or nutrition experts.
@BigGirlFeats said the best thing I’ve heard in a long time regarding thyroid cancer “That it’s an “easy” cancer it’s the best kind!” She went on to say “Ok, than YOU take it for me!!”
How dare any doctor tell patients how lucky they are to have this fabulous cancer?! Package it in a Tiffany box; Cancer is cancer, is cancer. Period!
Too many doctors marginalize thyroid autoimmune diseases. They barely explain what it is or what it does. Few of us walk out of the doctor’s office knowing what a thyroid is, even AFTER diagnosis! If left untreated or mistreated, this disease can kill you. Over 59MM people have a thyroid condition and over 20MM don’t know it. This is a pandemic issue with little funding, awareness or education. Most people don’t know where their thyroid is located, much less the power it has over a person’s mind and body. Become your own patient advocate. We provide a lot of resources.
As a few of our community members said: “Treat the patient, not the chart!” (Jill) “Why must I fight for normality?” (Amy). “Thyroid disease leads to brain drain” (Bonnie). “Wading through this crap to live!” (Linda).
That and more inspires the drive to do more, more, more.
A: What has been your proudest moment as a health activist?
KS: There have been so many. One that I recall off the top of my head was with a woman who wanted support, but wasn’t ready to write a letter. I asked her if she’d be comfortable emailing with me. She was. Over the course of a few months, on her own, she submitted a letter. I was so proud of her because I knew what a challenge it was for her to share that letter. We chatted during the entire process, from the moment it was published and while she was receiving comments. At the end of the day, she said “I found my voice.” She added that she’d never felt the level of support that she received from our community and how indescribable the experience was. She doesn’t know this, but I sobbed tears of joy for her.
A: The most challenging one?
KS: In the beginning a few folks took umbrage with the uncensored language, lack of religion and pin-ups that we pair with each literary piece. My goal was to engage, and make sure they understood why I made those choices for the brand, not to change their minds. I wanted them to feel heard because I did hear them. What was so great was that a few of those folks ultimately became community members. They understood, on a very deep level why Dear Thyroid was different and how that difference might be of value to them.
A: What do you wish the general public knew about the thyroid and thyroid conditions?
KS: Thyroid conditions are not an excuse to be fat! Conversely, people who look anorectic might have a thyroid condition. Stop assuming. Thyroid diseases and thyroid cancers are very serious health issues, psychiatrically and physically. Thyroid disease and thyroid cancer can kill you. Treat people the way you want to be treated. Don’t judge and don’t mock a disease you know nothing about. Think about what you want to say before saying it.
PLEASE check your neck. Request a full thyroid function blood panel. Look up the symptoms of thyroid diseases and thyroid cancers, and if you think you have a thyroid condition, run like a dog to an endocrinologist. Oh, and for those who think this is an easy fix or an inexpensive disease to treat. WRONG. This disease is very costly.
A: What do you do when you’re not advocating?
KS: Writing, rinse and repeat. I’m also reinventing myself. Reading – I’m a Beat Literature junky. Collecting – vintage tchotchkes and perfumes. Rebuilding – relationships. Adding new cards to my “Guilt Rolodex” and maintaining a high level of neuroses.
It’s a brand new year, what is in store for the future Dear Thyroid and thyroid awareness overall? We are SO EXCITED ABOUT THIS YEAR! All caps and an exclamation point, word! New partnerships are in the mix, becoming a fully fledged non-profit, launching our family outreach and support program, and doing everything we can to continue our unique approach to awareness, education and support.
Thank you so much for taking the time to interview Dear Thyroid. We very much appreciate WeGoHealth.com and the good work you do.
Special thanks to Katie for sharing her story with me. I eagerly await more of her impending advocacy endeavors and hope to be able to feature more of her and her community’s work on the blog!
Learn more about Thyroid Awareness Month and be sure to check out more of her work and interact with her and her community now:
In honor of January’s Thyroid Awareness Month, I had the awesome opportunity to interview Katie Schwartz, Health Activist mastermind behind the community Dear Thyroid™. Like her community, Katie is fiercely dedicated to being honest and real about life and thyroid conditions. Her responses to my questions are saturated with rich, fun language, likely due to her background as a comedy writer and fellow lover of words. In addition to being well-spoken, Katie takes a fresh approach to advocacy that is both light-hearted and content-centric. (Perhaps it’s no surprise why I’m such a fan!) Personally, I connected immediately with Dear Thyroid’s mission statement and their literary focus. It doesn’t take long to see why this community is special and why it has engaged so many. A self-proclaimed “pushy broad,” you can expect many more great things from Katie and her community in the future.
Amanda: I’m so excited to be chatting with you today Katie! Thanks so much for taking the time out to share with our community.
Katie Schwartz: Me too, Amanda! You’re passion and enthusiasm for health advocacy and WEGOHealth.com is infectious. LOVE IT, GIRL. Thanks so much for your time and the opportunity to talk about Dear Thyroid™
A: First off – tell us a little bit about your background and why you became an advocate for thyroid diseases and thyroid cancers.
KS: I’m a comedy writer. Life, pre-sickness, was fantastic. I appreciated my life, family, friends, and valued time; mine and others. I knew who I was and where I came from. I didn’t need an internal or external makeover. I didn’t need a disease to teach me anything. Suffice it to say, I don’t believe that we create disease or invite it into our lives. Disease just is. When it happens, life as you know it is forever changed, for yourself, your family and friends.
Though I was diagnosed with Graves’ and Graves’ eye disease 4 years ago, I’ve had it for at least 10-years. Unbeknownst to me, it was genetic.
Unfortunately, I almost died from thyrotoxicosis and thyroid psychoses. My mother and sister intervened to save my life.
Upon diagnosis, I wrote scathing hate letters to my thyroid. I wondered if anyone wanted to write one too. One day, I launched a blog and invited other thyroid patients to write and submit letters to their thyroids. Within a few months, a brand, a website and a community were born.
As letters poured in from patients and survivors; I realized that elements of my story kept reflecting back to me in various degrees. Multiple misdiagnoses, mistreatment and neglect were as normal as brushing your teeth in the morning. The more I read the more heartbroken and enraged I became. These exquisite, brave and wonderful women, men and young adults had rich, full lives that were ripped away from them without forewarning or consent. Their courage to keep fighting and sharing their stories was the impetus for my unwavering determination to be part of the movement that invokes change for thyroid patients. That and I am a pushy broad. So, I’m not giving up.
A: What made you get involved in the first place?
KS: I was frustrated. I wanted to know exactly what other patients were going through, in their words. I wanted the uninterrupted, uncensored grit. I didn’t want anything sugar coated. I was frustrated by the lack of spinning and spiraling. I thought, certainly others feel this way too, right? Anger seemed to be taboo. Not that anger is an aphrodisiac or anything; I just refused to believe that I was the only one who felt angry about my disease.
Save religion and politics, anything goes on Dear Thyroid. This disease takes your mind to dangerous places and morphs your body into an unrecognizable stranger, to yourself and others. That brings up a lot of anger, frustration and sadness. We encourage everyone to write honestly. We want the good, the bad and the ugly.
A: How has Dear Thyroid evolved to take that mission to the next level? What keeps you going?
KS: As Dear Thyroid™ has grown, so have our goals. From a literary perspective, we receive poems, songs, rants, raves, love letters, hate letters, letters to doctors, and to and from families, among other literary works. Each piece is a gift, and treated with the utmost respect. Letters from families are as important as letters from patients. This disease impacts them as hard as it hits patients. In addition, we have ongoing columns about Graves’ disease, thyroid cancer, chronic illness, and a few more coming soon. We also giveaway Thyroid Awareness Bands, provide offline local support, family support and Wearing My Disease on My sleeve. Recently we launched a “Thymentor” program. We sell humorous T-shirts. (To be clear, we are in the process of becoming a non-profit and we do not accept any revenue.) We also partner with other organizations and groups to support their awareness endeavors.
I am empowered and inspired every day by our community and their courage. They motivate me to do better, fight harder and challenge myself to think as far outside the box as possible, to make life better for all of us.
As for the Dear Thyroid Team, I am VERY lucky to be working alongside such extraordinary, dedicated and talented individuals. Our team members donate their invaluable time, to write columns, support community members, and forge partnerships with other organizations. They donate their time—THAT’S AMAZING. They give so much of themselves to our community. I am in awe of them and have tremendous respect and gratitude for them. Each has such a unique point of view. With a pure heart and passion for their work, they bring it.
Stay tuned for Part two of the interview with Katie where we discuss online activism, the highs and lows of online community, and the thyroid itself!
Website: Endometriosis: The Silent Life Sentence
Blogging since: March 2007
Occupation: Freelance Writer, Freelance Correspondent for a local paper, an Aspiring Novelist, and a Part-Time Head Teacher at a Day Care. Above all, I’m also a mommy to two wonderful little kiddies
What made me start blogging?
I began blogging mainly as a cathartic exercise. I had no one in my community to talk to who had endometriosis and who could identify with what I was going through—and I needed an outlet to “unload.” My mother had had endometriosis, but her hysterectomy at 28 left her disconnected and unable to help me. My husband had been through so much with me health-wise and I didn’t want to drag him through yet another emotional medical journey.
So as a writer and someone who enjoys journaling to work through her troubles, I opened a blogger.com blog. I began cataloging my experience of being diagnosed with endometriosis as well as a very frightening mammogram. Eventually, I moved my blog over to wordpress.com and began getting a plethora of responses from women just like me. These women were my age, younger, even older! I couldn’t believe it–I wasn’t alone! They were thanking me for being so honest and raw with my language and for really capturing what it feels like to have endometriosis. And I realized my blogging wasn’t just for me anymore, it was for all of us “endo” girls. My blogging became a mission to help spread endometriosis awareness and education, as well as still being an open book into my life as an endometriosis patient. I do this with the hope that other women who have the disease, or suspect they may have it, will not have to feel alone as I once felt.
What motivates you in your writing?
My pain motivates me. It reminds me that life is short and that no amount of pain is going to stop me from living every last minute of it. I often write through the pain.
My readers also motivate me. Without them I would be writing into an empty void with no one to bounce my ideas off of. Their comments are often inspirational and I enjoy them so much!
Who do you admire in the Endometriosis community?
I really admire Jeanne from ChronicHealing.com (formerly Jeanne’s Endo Blog). She’s an inspiration for women with endometriosis and other chronic illnesses. During the month of March (Endometriosis Awareness Month), Jeanne created the hash tag #endo for Twitter and had it placed in the Twitter Hash Tag dictionary. It’s use in now widespread on the social networking platform. Also during this month, I instituted the phrase for use on endometriosis blogs and Twitter: “March Blogging Madness for Endometriosis Awareness.” And Jeanne was instrumental in helping to circulate this catchphrase. Jeanne is always willing to come to the aid of a friend, endometriosis sufferer or not.
What are the most common questions people ask you – and what do you tell them?
I get asked about my experience a lot and I often tell them my personal account—how I was diagnosed, etc. But I reiterate to each individual that the time it takes to be diagnosed is different for everyone. The only way for endometriosis to be diagnosed definitively is by laparoscopy. This diagnosis takes, on average, 9.9 years. During this time, doctors may “suspect” that you have it, which was my case for years. They can “suspect” and treat you to an extent all they want. But to be diagnosed one way or the other is important.
I’m also asked how I deal with co-workers, family, friends, and people who just don’t understand the pain I’m going through with my endometriosis. This is a difficult thing to deal with—people who don’t “get it.” It would be easier if we had broken bones, or even cancer. People could see our casts or our hair falling out from the chemo—and they would sympathize with our pain. But when the pain is so internal, so deeply hidden in our wombs with no external reference point for others to identify with, it makes it almost impossible for them to understand.
My answer is—you can’t make them understand. They will never understand because they can never walk in our shoes. But take two people with endometriosis—they can look at each other and they just know. They know each other’s pain and they don’t even have to describe it. They know the cramps, the bleeding, the cysts, the adhesions, and the endless pain. They just know. And, while you can’t make other people “understand,” you can educate them.
The more people we educate about endometriosis—in the work place or in the world—the more we will be taken seriously by our co-workers and loved ones. Endometriosis isn’t simply a “bad period,” as non-sufferers believe. And we need to get that word out. We need to band together, with those who understand our pain, to get that accomplished. We are not a minority; after all, according to the Ohio State University Medical Center, endometriosis is more common than both AIDS and cancer. That makes endometriosis patients a majority, a strong majority of 89 million women worldwide. When we combine, we can get our voices heard.
What would you most want to say about your condition to someone who doesn’t have it?
We are not drug-seekers—we are actually in pain. We are not lazy—we are prone to sitting on the couch in a puddle of tears because our insides are bleeding. We don’t need your pity—we need your honest, compassionate support. We don’t need or expect that you will understand what we are going through. We need you to understand that you never will. We just need you to acknowledge that the pain isn’t a specter, an imagined thing come to haunt us, or something we created in our minds. We need you to acknowledge that we are not “making the pain up,” not receding into tiny balls of tortured women every month in a desperate cry for attention. We just need you to acknowledge that our pain is real—even if you can’t feel it or see it.
What is your favorite health-related resource?
That’s a tough one! I have so many health-related sources I use. I would point readers to WebMD.com, though. I read the articles and use their little quizzes and tools often. It’s a great site and health source, full of wonderful references. I even have their gadget on my iGoogle homepage so I can receive a current feed of articles from WebMD.com.
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