Today is World Diabetes Day! So we wanted to share this recap of last Friday’s Roundtable with awesome Health Activists in the Diabetes Online Community (DOC). How are you raising awareness this month? –Amanda
Roundtable Recap: Diabetes Awareness Month
In honor of Diabetes Awareness Month, WEGO Health decided to highlight (and learn) about the disease that may seem a little taboo to those who are not directly affected by Type 1 or Type 2 Diabetes. We love to bring awareness and information to others who may be able to use the info to help themselves or those in their community. In Friday’s roundtable we focused on Diabetes. We found several amazing men and women who are also trying to spread the word about Diabetes, Jen (@BlueHeelSociety), Tarra (@msfirecracker22), Mark-John (@markjohn1 ), Sara (@saraknic), Tony (@type1rider), and Gloria (@GloriaLoring). These six incredible people shared their stories and their helpful advice about managing the disease, advocating for yourself, and facts about Diabetes.
Mark-John – http://www.1diseaseworldvoice.org/
Tony – http://www.type1rider.org
Gloria – http://www.glorialoring.com/
We all start have start somewhere! How did you get involved in advocating for Diabetes?
Jen: I first got involved in 2005 when my 4 year old was diagnosed. Together we’ve done a lot for Diabetes like visiting congressmen. Then my older daughter was diagnosed recently, so now we’re getting her involved. When she was diagnosed going into college she could not feel lonelier. And although there is a great online community she wants real people to hang out with so I’m trying to put her in touch with people as best I can.
Mark: I was 54 years old when I was diagnosed with Type 1 ½ which I have never heard of. I was hypoglycemic; my wife found me in the office chair looking like a zombie and rushed me to the hospital. Then I got the diagnosis and looked for the answers on the internet and noticed there was a void. There were so many great people online but no one in the neighborhood. That’s what Diabetes needs, an outward program where people need to be proud of it and reach out. So we started organizations that built communities on the outside. I’m trying to make people come out of the woodwork and not be afraid to go outside and scream “I have Diabetes!”
Tony: I kind of fell into being a Health Activist. I was motivated by speakers at the Diabetes Exercise Sports Association conference to post about being the first diabetic to compete in a 24 hour solo mountain bike race. Then I started to get e mails from other athletes who have Type 1 all around the world. We promote awareness and encourage people with Type 1 and Type 2 to not feel discouraged by the disease at all.
Gloria: I became an activist in Diabetes community because my 4 ½ year old son got diagnosed in 1979. I am a singer and an actress and I started Days of Our Lives Celebrity Cookbook that raised over 1 million for Diabetes. I’ve written six books benefitting those with Diabetes.
Connecting to the online community is a great way to meet others that share your passion for Health Activism and let you know you are not alone on this journey. Social media has become a huge tool in connecting with others in your community.
How has social media and the Diabetes online community (DOC) changed your personal health journey?
Tarra: It has actually been very valuable. I recently ran into major issues with the Insulin pumps and someone read my blog and shared it and I had 30 or 40 comments in a couple of days telling me what to try. My doctor or the pump company didn’t know what was wrong and then I found out I had an allergy. I would not have found that out for quite a while if it wasn’t for the online community. You guys were more helpful than my doctor and the company. Everyone I’ve met has been so kind and so sweet.
Mark: I had a hard time because I didn’t know when I was going to drop. I would go on a job and just pass out. It’s a scary feeling. The DOC listened when I complained. Even if it wasn’t diabetes related, they all stood by me and said “you’ll get through it.” If it wasn’t for them coming through and giving support I would not have gotten though my tough times.
Sara: Before I found the Diabetes online community I would go to my endocrinologist and I didn’t make any changes on my own, I would wait for him to tell me what to do. Then I found the Diabetes community and it turned into my doctor asking me what I wanted to talk about. It changed it to something where my doctor is guiding my health to something that is personal and I am controlling my disease and treatment. I gained knowledge.
Tony: Last year I was at a race and I was put in a life or death situation. The encouragement from DOC got me to continue to ride after that. DOC keeps the spirit up of those with Diabetes every day. If someone is down there are 100 people that are willing to pick them up. It is in my experience that Diabetes is not a black and white disease. We all know you can eat the same exact food everyday and have different blood sugar ranges. And that’s one of the hardest things to grasp because patients often look for the answer and there is no answer it’s just kind of dealing with Diabetes on a daily basis, and that’s okay.
Gloria: As parents you’ve got to have someone who is a few years older than you that have a child approximately your child’s age that can help you through it. I give kudos to all of your who have found connections and provide connections to others through blogs and social media. There is so much value talking with people that have a lot of knowledge, it is just essential.
In honor of Diabetes Awareness Month there have been a lot of new and exciting programs being created. What are some of the programs you’re most excited about?
Jen: For World Diabetes Day we are trying to get monuments to light up blue! Niagara Falls will be blue and we are trying to get the Empire State Building to light up blue. The Blue Heels Society is starting an initiative to wear blue shoes (any shoes, not just heels, men!) and to talk about Diabetes while wearing their blue shoes.
Sara: I know you mentioned the Big Blue Test and that is a big thing to focus on because we only have a week left and are just a little over halfway to the goal. The Big Blue Test is that you exercise 14 minutes a day, and if you do it you donate $5 to an organization. It’s a Diabetes awareness initiative that people with or without Diabetes can participate in. One organization is in Haiti where I’ve been and I asked a hospital if they treat people with Type 1 Diabetes and they said they don’t treat Type 1 because they aren’t living long enough. So if exercising 14 minutes a week can save a life then people should do it.
When it comes to Diabetes, I think most can agree that there can be a thing or two done to raise awareness. How can other Health Activists raise awareness and education about Diabetes?
Tony: Well I think the main problem is there are too many groups working in too many different directions. We are very lucky we have a lot of different groups but I would love to see those groups come together. And we don’t really have a face, we would love one face for people to see and recognize, someone to work over a long period of time so when people see them they automatically think of Diabetes. We don’t have one solitary voice.
Mark: One of the things we try and push through the organization is, socially we are all diabetic but medically we are all different. I don’t care if you’re Type1 or Type 30—we’re all in this together. I promote “Type D”’. If you look at Livestrong the one thing I can say about that community is that it doesn’t matter what type of cancer you have, you all have cancer. All they care about is “how can we make your life better?” They care, the whole community cares.
Sara: I think you are dancing around the issue I keep dismissing. I believe we are one of the only diseases that fight amongst itself. What is missing from Diabetes awareness is Diabetes awareness.
A few weeks ago we had the honor of co-hosting a panel discussion alongside Amy of Treatment Diaries. The discussion centered on the patient experience and how social media and online resources are helping change patients and caregivers’ lives for the better. It was an awesome chat that happened during the panel and on Twitter – and we hope to do more of these in the future! Thanks to Treatment Diaries for hosting and sharing this recap with us:
We had an incredible Roundtable last Friday in honor of Ovarian Cancer Awareness Month. While other cancers seem to get the spotlight – the symptoms of ovarian cancer are often mistaken for other things and misdiagnosis is common. As a woman I found the information absolutely invaluable. I’m so glad we got to know these three Health Activists – they are doing amazing things for the Ovarian Cancer and women’s health communities. –Amanda
Roundtable Recap: Ovarian Cancer
by Marissa Herman
WEGO Health likes to highlight (and learn) about health conditions that aren’t necessarily as well known as others. We love to bring awareness and information to others who may be able to use the info to help themselves or those in their community. In last Friday’s roundtable we focused on Ovarian Cancer. We found three lovely women who are also trying to spread the word about Ovarian cancer, Carolyn(@karenecpaceocf), Connie (@conniescheel), and Denise (@servivorgirl). These three amazing women shared their stories and their helpful advice about early detection, advocating for yourself, and facts about Ovarian Cancer.
Connie – cancerasmycatalyst.blogspot.com
Carolyn – www.karenecpaceovarian.org
Connecting to the online community is a great way to meet others that share your passion for Health Activism and let you know you are not alone on this journey. Social media has become a huge tool in connecting with others in your community.
How has social media and the online community changed your personal health journey?
Carolyn: By just making me wiser. I found out about the CA 125 blood test online. Going online has helped me be wiser about the things I need to watch out for.
Connie: I thought it was important that other people knew that at 32 you can be diagnosed with Ovarian Cancer and here’s what it’s like to go through it. I wanted to teach people this is how you cope with it and it isn’t a death sentence. Social media has just been the link to the world. I mean that’s the loudest voice available to us right now. Facebook, twitter, with social media you can reach a lot of people and through them it starts a chain reaction.
Denise: For me, I started it originally because I needed someone to talk to, I know that sounds kind of strange. I started seeing, because I became a member of Facebook and Twitter, I started getting more and more support. I started seeing that this is a really valuable resource to reach other women, and men, people and health care providers to maybe hear my story. Maybe it will change even one doctor, yes one medical provider learn a little bit more, pay a little more attention, anything to reach more people in his or her office, anything to reach more people so it is incredibly valuable.
Unfortunately, behind every lesser known illness there are bound to be myths and misconceptions.
Carolyn : One of the main myths is that there is a certain age that get Ovarian Cancer and that is certainly not true. Like a lot of older people get it or mostly people that get Ovarian Cancer who have never had children, which is a myth.
Connie: A myth that touched me very personally was your weight. I think there’s a misconception that if you’re healthy and eat well and you’re thin, then you are immune to ovarian cancer, or all cancer. And that’s not true. Just like if you drink and smoke and do all those things that you will get cancer. There are no guarantees either way. I also think women more than men have been trained to just go with whatever your doctors say. You have to be your own best advocate, you have to be your own loudest voice because no one will fight for you like you will.
Denise: I would definitely have to agree about the age and health for sure, because I was told I was too young to have ovarian cancer 3 times. I don’t think we have enough about ovarian cancer to say what is and what’s not true about ovarian cancer. When it comes to ovarian cancer there is just so much we don’t know, the best thing we can do is know our bodies and listen to our bodies and read about it.
Not many people know about Ovarian Cancer. What would you like to share with other Health Activists about it?
Carolyn: It’s affecting more and more women now. I have never heard of Ovarian Cancer when my sister was diagnosed. And how many women are like me? There are a lot of people that have no idea about Ovarian Cancer.
Connie: I think the most important thing is that ovarian cancer looks so much like so many other disease and I think people aren’t recognizing it as Ovarian Cancer. And we don’t want to scare people, but we want to encourage women to go to the doctor and rule out that they Ovarian Cancer. It may or may not be but people should rule it out as soon as possible.
Denise: Join other kinds of forums because one of the things is that our circle is very passionate about ovarian cancer because of how it sneaks up on us. I think that if Activists reach out in other communities and become a part of the group they can learn about Ovarian Cancer in that way. And I would encourage people to share each other’s organizations, promote each other, that’s important.
Ways other Health Activists help the Ovarian Cancer community
Carolyn: Use the internet. There are a lot of people out there, a lot of organizations including the one’s we are part of that are trying to be an advocate for Ovarian Cancer. So, definitely use the internet and volunteer. There are a number of organizations all around, Washington, Florida, Tennessee, that they can be a part of. Put the word out there, they should know the symptoms of Ovarian Cancers.
Connie: I agree with Carolyn, getting online, going to your local support groups and cancer centers and asking “what can I do?” There’s a great opportunity if you have Facebook, Twitter, to just start posting things and sharing things from websites. There is tons of great information available that we need to get circulating on an individual level.
Denise: Definitely reaching out on the internet and just searching for national and local organizations. I also like to reach out personally with the local organizations the one on one. Find your comfort zone; there are many ways you can help, many, many ways.
Programs, tools, information, or resources would you like to see created especially for those dealing with Ovarian Cancer
Carolyn: I am not a survivor but I am a caregiver. There was nothing for caregivers of Ovarian Cancer. If there was more for the caregivers and tools for the caregivers, that would be helpful. Something that could show this is what you do for this and this is what you can do for that.
Connie: I agree, more support for the caregivers. I think, in a way, Ovarian Cancer patients and caregivers feel a little ostracized. I would like to see a change. An app to help organize your notes from your doctor and prescriptions would be nice. The biggest thing for me is a way to get complementary therapies to people. It should be more known for woman that there are other ways to heal and to cope.
Denise: I would like to re-emphasize that feeling of being ostracized. I needed resources, I needed help, I needed all sorts of things because my life was turned upside down. An education series, a video series of basic gynecological health to talk about what if it’s Ovarian Cancer and what are questions to ask when you get your surgery. Such a simple, basic thing, but on a video you see a face, you see a real person talking about it. It would be easier to absorb it because it’s so scary.
What tips or advice do you have for someone who is just getting started in advocating and has decided to write a blog about their own fitness or healthy living journey?
Carolyn: Know their bodies and know if something different is going on in their bodies.
Connie: Listen to your bodies, pay attention to yourself, value yourself, value your health, and find your peace.
Denise: To learn more about your family history and maybe keep a journal about how your cycles are an things like that. I think we’re taught to dismiss stuff, so maybe keep a journal of unusual things.
I would like to thank Carolyn, Connie, and Denise for talking with us. It was really interesting to learn all of the stigmas and gain new knowledge about this growing illness. They each shared valuable insight and great tips. Even though they each have a different story, they all share the need to spread the word about Ovarian Cancer.
In the spirit of Invisible Illness Awareness, WEGO Health partnered with Christine Miserandino of But You Don’t Look Sick to host a series of Roundtables with Health Activists. In the first installment, Christine discusses “The Journey to Diagnosis” with leaders in the online health community: Amy Una Vita Bella, Rhiann of My Brain Lesion and Me, Andrea of The Great Bowl Movement, and Michele of Your Life After Trauma.
The conversation ranges from why each leader got involved with online community, how to deal with mental illness, the struggles of being undiagnosed, what it means to be a “spoonie,” and tips for other patients who may be coming to terms with symptoms or new diagnosis.
This is our first attempt at publishing one of our Roundtables – as this is something we’ve wanted to do since our Health Activist Roundtable Program began.
Listen to part 1 (with an intro by our own Caitlin):
You may have noticed that we did something a little different during last week’s #HAChat. #HAChat and #HARoundtable have combined forces to bring you a new and improved #HAChat 2.0. We brought a group of fabulous ladies from the Invisible Illness community together for a live discussion while also hosting our weekly twitter chat. The result was incredible. Not only did we hear from some wonderful voices of the invisible illness community, we saw lots of new twitter handles in the chat as well! In honor of Invisible Illness Awareness Week, here are some highlights from last week’s discussion.
But first, our
What does “invisible illness” mean to you?
ThrivewithLupus: Illnesses that may not always show externally, but can wreak major havoc on the body. #hachat
Rachel: I struggled for a long time wondering if my illness counted and I found that when I started by my blog, I would get a lot of private messages, saying – I didn’t want to comment because I was worried that my illness didn’t really count. I’ve found that pretty much any illness or anything that makes you different or makes your life that is a medical condition whether it’s physical or mental, it all counts. The first step that we need to take with health activism is getting people to stand up and say that my illness counts.
Christine: I constantly hear how great I sound, or “oh you still have that?” or “aren’t you better yet?” and I think all of us can kind of identify with some of those catch phrases. But the one thing I remember and the reason that I started blogging so aggressively because, I volunteer for the Lupus Alliance here on Long Island and a girl was going to prom and she said that she wished that she had a broken leg because then at least people would understand why she couldn’t at least walk or dance at prom. And I realized how important it was to kind of get invisible illness out there because if this girl was crying to me that she would rather have a broken leg than go to prom, then there’s a problem here. And what made it even sadder is I’ve been diagnosed since I was 15 I’m 35 now and some days I wish I had a broken leg… That’s what invisible illness means to me, it’s that desire to almost want it to be visible because then all of the sudden you’ll be understood. It’s that desire to think that if it was visible then someone would take it more seriously.
klgold: OMG this prom story on @wegohealth #HAChat hits home. It was like my sr prom story not being able to explain why I couldn’t dance #iiwk12
JaneWaterman: A dear friend of mine has #lupus but is also an amputee – the visible illness doesn’t gain her any more support: it’s quite shocking #hachat
Lauren: I’ve had IBD for seven years and when I was first diagnosed I was very quiet about it and I didn’t like to talk about it… I found myself downplaying the disease a lot. And I think a lot of us tend to do that no matter what the disease is because you want to stay positive. It’s as much for the people in your lives as for yourself. In the last year I’ve been much more honest. The more honest I am with people in my life, the more they understand.
Summer: In terms of how I define “invisible illness” – anybody who has ever been looked at and judged and then accused of malingering or faking sick.
What makes invisible illnesses unique?
Rachel: One of the biggest things is that invisible illness is so rampant. I read a statistic that 1 in 2 people have an invisible illness, but no one talks about it and it can’t be seen so no one knows about it. There’s been a really strong movement for people with “disabilities” which means visible illness, but invisible illness doesn’t seem to be as epic of a struggle because no one want to hear about it.
Serenebutterfly: Invisible illnesses are unique as you never know who else is suffering out there so getting support is that more difficult #HAchat
Christine: A few years ago right after I had my daughter I actually had to go through chemotherapy for my lupus and I lost all my hair. I had many a family member or friend say to me, “oh now you’re sick”. The irony was that the chemo was actually putting my lupus in remission so I felt the best I had in a long time, but now that I had lost my hair, now I was really sick. I do think we have these preconceived notions of what sickness looks like or what makes it valid. If you’re in the hospital, you’re sick. But when I was getting IV chemo from a home nurse I had friends that said, “at least you’re not in the hospital”. It’s the same poison going through my veins!
kimmiecollas: even those with more visible disabilities discount our issues- even within the disability community, we tend to be marginalized #HAchat
Lauren: I wanted to put a little positive spin on things. I think in some ways it’s a gift that you can’t see my illness because I get to choose who I want to share it with and how much information I want to share. Like when I was in college and I was just diagnosed and didn’t want to talk about it all the time, I could choose not to talk about it. Now that I want to be more vocal, I can make that choice.
LAlupuslady: Aside from the “invisible illness” the revealing question… do i share? when do i share? (dating, on the job or friends) #hachat
Christine: One of the things we touched upon is that many invisible illnesses come with friends. I always joke that lupus never comes to the party alone, and it’s very hard to distinguish between illnesses that you cannot see. Is that my lupus or my fibro? I think sometimes we have to become our own body detectives of figuring out what is going on with our bodies at any given moment. Since it’s invisible, there’s no concrete answer why we’re having a specific symptom at a specific time. I think that is unique to having an invisible illness. Many times we have more than one. We’re usually on more than one medication, which bring more than one side effect. Between all of those variables, it’s figuring out where something is coming from and how to deal with it or fix it or treat it.
Rachel: A lot of times when I’m explaining my illness to somebody new, I explain that on a daily basis I have to pick what kind of sick I’m going to be. Do I want to hurt today? Do I want to throw up today? And the idea that you have a certain number of spoons per day can be detrimental to people believing that I’m sick. People don’t believe that you can do these amazing things and then you’re out the rest of the day.
Summer: On a good day, I’m fine. I can go out and do things with friends. I can leave my safe zone. I can shop in the grocery store. Then for reasons that I still don’t quite understand, I can have such a huge problem with those very same tasks. I don’t really know the reason behind that. I think I’m beginning to understand what a lot of my triggers are, but others are always questioning. Why could you do this on Monday but you can’t on Tuesday?
Lauren: The hardest thing for me to adjust to is that I am super type A, planner, like to know about things ahead of time. I am not a “fly by the seat of your pants” type of person and I sort of had to learn to be one. You have to learn to adjust your expectations and adapt.
klgold: Challenging to plan ahead in that I don’t know what each day is going to bring. How will I feel tomorrow? #HAchat#Lupus
Christine: You also have to manage the guilt that comes with that. Just because it’s a good day doesn’t mean we need to fill it with all of the things we missed on the bad day.
How can we work together to promote awareness across invisible illnesses?
Summer: I’m finding a lot of folks my age (upper 20s) are more willing to come out and talk about specifically illness issues. There’s still a stigma associated with all sort of disorders, but the more you talk about these things, the less of a thing they become.
Christine: BYDLS really started with Lupus and I kept hearing people say o oh I can relate that to my MS, cancer, bipolar. At first I didn’t know how I felt about it. It was weird – the whole world was taking on something that was so closely woven into my life and was so personal. Now there were spoonies. If I can help one person help one person in their lives understand what they’re going through, then I feel incredibly blessed for the day.
Lauren: One of the best ways we can promote awareness across illness is to just be patient and empathetic with people.
Christine: A real easy way to help each other is to like each other’s posts, forward each other’s tweets and posts. Even if it’s not about your illness. Because it’s going to go back around. If I see a great post but it’s not necessarily about my illness, I feel like someone in my life might appreciate it, or that person posting it might appreciate it getting around. If we help each other through whatever social media means we have, we can be a wave of support for each other. So often we look to the outside for support but within our own little community of invisible illness online awesome people, we can support each other so much more than we give each other credit for. We can be each other’s biggest supporters.
Rachel: I almost didn’t say this because I think it’s a really silly little idea. Something that I’m doing is I’m actually handing out at school some little ribbons that are see-through, sheer, for all invisible illnesses.. Just an easy little thing to do to start conversations.
What is your “visible hope”?
Christine: My daughter. Because those times where we don’t want to take care of ourselves or we don’t want to go to the doctor or do the things that we need to do. She’s my reminder that I have to and I want to so that I can be the best mom that I can be. And actually, I have spoons all over my walls in my little office that people have sent me. All different types of spoons, wooden, metal, etc. I always say that that’s my visible hope because if people put their hope in me then I need to put hope in myself.
Lauren: I mentioned before that I worked for CCFA and I run our charity running/walking team. Every weekend I get to go to training and see our team of 60-70 people who are running walking and raising awareness some of them are patients or family members. A lot of them are people who wanted to do something nice for someone else and had never heard of Crohn’s or Colitis before. I cry at almost every practice every weekend because it’s so meaningful and empowering to see so many people banning together for a cause that maybe their friends and family didn’t know about before they started training with us. Every weekend I get that visual reminder and it’s awesome.
Summer: Part of the problem with panic disorder is agoraphobia, but before I developed panic disorder I loved nature and traveling. l and what I think I’ll start doing now is taking a photo of the location whenever I end up somewhere that I normally wouldn’t be able to access. Whether it be camping or at the top of a hill or collecting a series of photos that demonstrate to me later on that I can do this. Even after struggling with panic disorder for so long, it will really give me hope that I can do it again.
Rachel: Before I was diagnoses, I really identified myself as a dancer. I was in the color guard of my high school and never stopped dancing after that. My dreams of dancing professionally were derailed with my diagnosis. My visible hope would be my old color guard flags. I’ve kept all of my old equipment, and even though there’s no way I can participate in competitions or teams anymore, I make a point of once a week to go outside and throw stuff around and spin stuff and dance a little. It’s comforting to see them every day, and to know that I didn’t give up, If I push myself I can still do it a little. Exercise can really help chronic pain. At first it’s really awful and hurts more. But you can really treat chronic pain through exercise and dance.
Serenebutterfly:T4: My visible hope is receiving lovely comments on my blog or someone checking in on me via Twitter or Facebook – feel valued 🙂 #HAchat
SaraSpark2: T4: Visible hope is growth of support and understanding for kids who must eat differently + better diagnosis and treatment of #lyme #hachat
Join us every Tuesday at 3 PM ET for the #HAChat! From now on, WEGO Health will be hosting a Health Activist Roundtable during the #HAChat on Tuesdays at 3 PM ET. Well, except for the first Tuesday of every month where we will just have a chat to talk about the month’s theme, but every other Tuesday you will have the opportunity to listen in to the Roundtable and participate in the live twitter chat. There are about 20 spots available in the online meeting room, so be sure to get there early if you want to listen!
Continuing with A4A month, Monday’s HA Roundtable focused on parenting and caregiving for a special needs child. The role that a parent or caregiver has with a special needs child is a very complex one. During Monday’s roundtable, Michele Julis-Gianetti, Adrienne Bashista (@easytolovebut and @adriennegail) and Caroline McGraw (@awishcomeclear) shared their life, experiences and helpful tips in regards to caring for their loved ones with special needs. Below are some highlights that I would like to share. The discussion was definitely a compelling and interesting chat!
Michele – http://www.michelegianetti.com/
The challenges that a caregiver faces while caring for special needs child is widespread. Making sure that you are planning ahead is important to every caregiver and to focus on the positives and the growth. Lastly, it is important to take care of yourself!
Michele– To be two steps ahead in my thinking and of [my] planning… to keep the growing going.
Adrienne– To divorce ourselves from what we know are manifestations of his disabilities versus taking it personally… and maintaining that balance and also taking care of yourself.
Caroline– The biggest challenge is being able to separate the behavior from the person.
Going online and finding others to relate to can help a caregiver get a better sense of their situation and can be a useful tool for caregivers to use in their personal caregiving lives. It is important for a caregiver to create a community instead of feeling alone.
How does advocating online help you as a caregiver?
Michele– A chance to share and to be apart of something that I know I would have loved to have had.
Adrienne– When you have a child with special needs, it is really hard to find people who you think will understand… social media has allowed me to tap into other people who have kids who are going through the same things and I am really happy to be connected to people who value that and help each other in that way.
Caroline– sitting down and writing about to other people, forces us to view the bigger picture and see that this is a real struggle. And to see, that maybe what I am going through here is something I have to give to someone else and something I can offer.
Challenges unique to special needs
Michele– To wake up and know you need to be ready for the day, and know that if you plan a day, you have to make adjustments…it is the constant mental thought.
Adrienne– From thinking that he was doing it on purpose, or that he would grow out of it, or if we can just find the right book, find the right sticker charts, do the right thing, we can get him to behave the way we wanted him to behave. To shift our minds to believe that it is nothing we can really do, his brain doesn’t work the way we want it to work.
Something that you wish people knew about parenting kids with special needs
Michele– We would give everything we have, own, and desire in life, to have our child have a typical life that others might simply take for granted.
Adrienne– There is a public perception of special needs parents of that we are saintly wonderful people. Number one, we are people.
A care-team is an important an important part of treating a child with special needs.
Adrienne– We had a family doctor, psychiatrist, neuropyhscologist, school personnel, speech therapist, regular therapist, things like that. But, since his diagnoses which happened a little under a year ago, we have actually shrunk the core group of people a great deal and this is to recognize the permanent nature of his brain damage.
Talking to your child about their special needs can be tricky but rewarding.
Michele– We’ve explained it to her and I think we are better for the explanation.
Adrienne– We have definitely talked to him about his special needs… he is a lot more accepting about the limitations we placed on him based on his own self knowledge…Overtime he has become self aware; knowing what he can and can not do.
Caroline– [We] try to take things that he can relate to, and that he cares about, and sort of transfer those… to try to control is behavior even more.
Transitioning care for when their child is reaching adulthood
Michele– Right now our beginning of transitioning is to cultivate her interest and to see what we can do with those and then look into the future. As opposed to whatever path might be the easy path.
Adrienne– Moving from the idea from him growing up to be an independent adult to growing up to be an interdependent adult.
Caroline– When Willy was born 25 years ago, none of this stuff existed [in regards to services for special needs children] so, there is reasons to be optimistic. But it can be daunting to look into that unknown future.
Tips and Advice for other parents with children with special needs.
Michele– Listen to your heart.
Adrienne– For people to know that they are not alone. It is very common to feel isolated and alone but in fact there are million, billions of people experiencing similar emotions… so it is very very helpful to make a connection with other people.
Caroline– I find it really important to spend time with other families and other kids with special needs and just to do that depersonalizing that we were talking about earlier… Second thing is to think about the story you are writing as a family. And to think that yes, we are going to have really tough days and we are going to face these challenges, but overall what do we want our home too look like and how do we want our home to feel.
I would like to thank Michele, Adrienne, and Caroline so much for participating in Monday’s roundtable discussion on parenting a child with special needs. It was really interesting and eye-opening to listen to them each open up about their personal lives, and offer some great tips and advice to other advocates. Even though each had distinct stories, they all shared the common role as advocates for their loved one, and each appreciated the distinct online community that they are a part of.
We’re hosting Roundtable chats every Monday, Wednesday, and Friday at Noon ET in August. This Monday’s chat focused on the topic of “Parenting a Child with a Chronic Illness.” Here were Monday’s panelists:
Scott Benner – http://www.ardensday.com/
Christina Ghosn – http://www.stickwithitsugar.com
Roundtable Recap: Parenting a Child with a Chronic Illness
With this month’s “Advocating for Another” theme, Monday’s Health Activist Roundtable continued to explore the connection between caregiving and advocacy. Below is a recap of the conversation with two panelists who discussed the issue of parenting a child with a chronic illness. If you are interested in joining us for one of our roundtables, please visit our Facebook event to RSVP. Here is a list of Monday’s participants:
Parents of children who have chronic illnesses, like Type 1 Diabetes, know the challenges of daily life in managing to keep their loved ones alive. During the Health Activist Roundtable on Monday, two special parents shared their views and experiences as caregivers and advocates for their children who suffer from Type 1 Diabetes. These caregivers recognize and understand the importance of getting the schools on board with their children’s condition, as well as the importance of educating the general population about diabetes.
The Challenges They Face in Advocating for Their Loved Ones
Christina: The lack of education in the world in regards to diabetes is probably the largest challenge that you meet, and the misconceptions that people have about diabetes. You want people to understand that diabetes is manageable because you don’t want them to be scared of it, but you also don’t want them to think that your life is a piece of cake (pun intended) and that it isn’t that simple.
Scott: The biggest challenge for me is not to let my daughter become her illness. It really doesn’t care if it’s your birthday. It doesn’t care if it’s Christmas morning, if it’s four o’clock in the morning, or if you haven’t slept in three days. It’s still going to do what it does and you have to manage it. At the same time, you have to deal with life, completely unattached to diabetes, while you’re literally keeping yourself alive. Imagine if you have to remember to make your heart beat, or if you had to think to yourself, “Breathe in, breathe out,” constantly. I think that’s what’s having a chronic illness is like.
The Most Rewarding Thing About Being an Advocate
Christina: Meeting people over the online community, in the social media, probably has been the most rewarding part for me. For my kids, it has given them so much confidence, and it just made them stronger people.
Scott: It would almost be too easy to say that meeting people has been amazing, but it is. I can’t tell you how many people have changed my life. I think the blogging helps me more than it helps them. It’s a great symbiotic relationship.
The Uniqueness of Parenting a Child with a Chronic Illness
Christina: We’re always on.
Scott: It never goes away.
Christina: One of the challenges is not the be the winey, difficult parent, but to be the parent that advocates for their kid to keep them safe, and at the same time tell everyone that they’re just like everyone else… There are so many other people involved in taking care of your children [teachers, babysitters, school nurse]. When you think about your care team, who do you include and how do you get them on your team?
Handling the Transition to More Independence
Scott: Lucky for us, right before Governor Corzine went out of office in New Jersey, he signed a bill saying kids with diabetes could test their blood sugar in their classroom. At the 504 meeting, I said I think it’s time for Arden (third grade) to start taking more responsibility for herself. She should start managing her own diabetes in the room by herself and she can call me if she has any questions. It’s going to give her freedom away from the nurses. It can’t be done before the kids are ready for it. It can’t be done before the staff is ready for it. You have to put all those pieces in place before you jump, and don’t jump too soon. Make sure you’re ready, and make sure your child is ready.
Christina: I think it’s an individual thing for each child, too. For Marcus, I don’t know, he’s a boy. He’s not going to be ready to test his own blood sugar in the classroom and then call me. He’s still going to need some reminders, while my daughter has been doing it herself since the fourth grade.
Education, Education, Education
Scott: About a week into the school year once everything settles down, I come into the classroom and talk to the kids for five minutes about what diabetes really is on a level that they can understand. Then Arden takes her meter out, jabs herself in the finger, makes a nice big blood drop so everyone can see it, tests herself, puts it away, and just makes the whole thing normal in five seconds.
Christina: Fear of diabetes or fear of chronic illness that could be life-threatening to your child is what’s going to drive all of the pushback from administrators and teachers at school. It’s like a thin, tightrope that you’re walking because you want to put the fear at ease, but then you also want to impress on them the importance of keeping your daughter safe because if she goes too low, she’s going to have seizures. She could die. She could go into a coma if her blood sugars are too high.
Scott: I just make it this idea that it’s really life or death important, and that most moments, most days, are going to go by without an issue, but if we’re not ready, you just need to know how to react organically when it happens. It’s just conversations – multiple, real conversations.
Sibling Dynamic in Managing Diabetes Together
Christina: It’s always a competition. You know, I treat them first as my child and then the diabetes second. And then at the same time, I remind my kids that they’re more than a number, there’s no good or bad number. It doesn’t matter how many times you say that because it’s always a competition. When they test their blood sugar together at breakfast, one of them is going to say, “I’m better than you!”
Advice for Parents with Newly Diagnosed Children
Scott: The first thing you have to do is find a community somewhere that can help you. You will quickly understand this illness better than the doctor you have.
Christina: Doctors offices should tell people that there is a huge community of support out there. And don’t forget to take care of yourself. You can’t take care of the people you love when your body is failing.
Scott: It’s important, if you’re in a two-parent household, that one of you takes primary care of what’s going on, but the other one can’t just fall out of it thinking you have it. Both of you need to understand how to help your child every step of the way… You can’t fundamentally ignore that having a chronic illness sucks. [The blogs] Being able to feel those emotions and not have to connect them to your own child, I think, lifts a pretty heavy burden.
Resources, Programs, and Research
Scott: Someone should go through everyone’s blog and pick out the most helpful blog post, put them in a brochure, and leave them in doctors’ offices. You can’t ignore that what’s happening online is so powerful.
Christina: We live technological society. We live in an online society where there is always support available. So regardless of the chronic illness, support is out there and you’re not alone.
Scott: I don’t want to look up one day and find out that [patient advocacy] burned out.
A huge thanks to Scott and Christina for participating in Monday’s stimulating roundtable discussion. Listening to their stories and perspectives was mind-opening for me. The work that they do as Health Activists brings so much honesty and inspiration to the community. This experience proved to me how dedicated Heath Activists and caregivers are to their loved ones, as well as to raising awareness about their conditions. Thanks for all that you do!
We hope you’ll be able to join one of the chats – you can RSVP here on our Facebook event to see who else will be attending.
In honor of Advocating for Another month we’re hosting Roundtable chats every Monday, Wednesday, and Friday at noon Eastern. Our first chat was this Wednesday and focused on the topic of “Writing about Your Children Online.” We hope you’ll be able to join one of the chats – you can RSVP here on our Facebook event to see who else will be attending.
Writing About Your Children Online
“You’re embarrassing me!” is a common expression that I think parents hear from their child at one point or another. I know I used the popular phrase in my time. In Health Activism, parents and caregivers share the most intimate details of their lives for the World Wide Web to read. These intimate details may seem embarrassing to some, but empowering and helpful to others. For caregivers of children, dealing with the struggles of blogging about their kid’s life can be very troublesome. From managing your ‘haters’ who give negative feedback about your blog to using initials instead of a full name because it may seem safer, parental caregivers are a unique group of Health Activists that have to deal with these problems everyday. But at the end of the day, writing about their children’s illness helps others in the same boat and helps the parent let go of frustrations and emotions. Jennifer B. of www.FoodAllergyBuzz.com, Mandi Welbaum of www.Momaroo.com and Scott Benner of www.ardensday.com shared with us their thoughts in our latest HARountable entitled “Writing about Your Children Online.” This was a very fun (and my first!) chat to be involved with! Here are some key quotes from the chat that stood out to me
Why they started?
Jennifer B. – “I just wanted to mainly share what I was finding and pick other peoples brains at the same time. So that my son’s life will be as typical as any other child’s life. Make it so it didn’t interfere with anything, I just wanted a normal childhood. The more I wrote about his situation, the more I learned, the more I found a sort of strength connected with other families in the same situation.”
Scott- “I literally got pulled into it by one really wonderful e-mail I received from a stranger, and it continues to be why I do it now. I now realize that I get as much back now from writing about Arden’s life as people get from it. And its become a completely a give and take relationship.”
Deciding to go fully public by using names?
Mandi- “It makes writing a little easier for me because it’s more like having a conversation.”
Jennifer B– “Stuff I am reading seems a little bit more legitimate when you can identify the person who is writing it…I wanted my blog to be taken seriously…I just didn’t think there would be any chance of that if I was a nameless person out there.”
Other people feelings about your writing about your children?
Scott- “I write from my view point. But when that happens, sometimes, it can make it seem to an outsider that my wife has no involvement with my children. Which of course isn’t true. So, I have been much more cognoscente with saying we.”
Mandi- “I have avoided blogging certain things because I know, ok if so and so were to read this it might cause a problem. So I said, great post, but I can’t do it.”
How do you decide how much to share?
Mandi- “I do comment about what is going on in town. And I want to be very diplomatic. I’m honest, but I want to keep in mind, gee my child’s teacher could be reading this or the principal.”
Scott- “I am doing it because it seems to help other people. In my mind, if I am not open as I can be, that what I can end up leaving these people with is a sense that they are not doing it right… I realized I was only talking about what is going right. So now when stuff goes really wrong, I talk about how wrong it goes…when I write I literally split my heart open and let it spill out onto my keyboard”
Mandi- “The more details someone shares in their post, people like that… That is what they want to read…. They want something that gets to them and gives them a mental image. Or, Pulls at their heart. Or, Makes their stomach flip.”
Dealing with negative comments:
Jennifer- “I have to be prepared for the kind of hostile comments I will get…I decided a long time ago to ignore these people.”
Mandi: “Anytime that we can rise above it, it is always positive. I am going t be honest, each time I give someone a warning or delete a comment, I do a little happy dance. Because I am like like, I am making the world a better place!“
Scott- “You can’t stop it, just moderate it. Crazy things happen, you have to keep moving.”
It was very interesting to hear from these three inspirational health activists. At the end of the chat I was left with a very thoughtful quote from Mandi in regards to new Health Activists that are considering writing about their children. She said, “If it’s something you want to do, just do it. Because even you don’t reach millions of people…even if no one ever reads it, you are still writing for you. You are giving yourself that self help and that therapy that we all need.” Although so much goes into writing and advocating for another, writing about your child’s illness is a cathartic release that may happen to help others in the process, but will definitely help you.