Today, in the latest in our series of interviews with our 2018 DiabetesMine Patient Voices Contest winners, we're talking with type 2 advocate Cindy Campaniello in New York. After being diagnosed with gestational diabetes during her first pregnancy in the early 1990s, years went by before she eventually experienced health issues that led to a type 2 diagnosis.
As an active volunteer organizer for her local DiabetesSisters group, Cindy has a lot to say about what she's experienced as far as stigma and discrimination. Here's what she tells us about all of that, along with her thoughts on how to better empower more people with type 2 diabetes.
Talking with Type 2 Advocate Cindy Campaniello
DM) Hi Cindy, your diabetes story started when you were pregnant, correct?
CC)Yes, I was first diagnosed with gestational diabetes in October 1992. My first pregnancy was filled with excitement and an uncontrollable thirst for orange juice. Each month I would get my hand slapped for gaining too much weight by my gynecologist. Each month I told my gynecologist that I was drinking two quarts of orange juice only. In my eighth month, I had graduated to six quarts and dragged my husband Lou in with me for my monthly exam. Lou interrupted the doctor who was now yelling at me and explained that orange juice was my best friend and he needed to back off. The doctor swore and said, 'Let's send you for a glucose test.' I was then sent to a high-risk pregnancy doctor. She had me come in every day with 2 to 4 quarts of water intake and did ultrasounds checking my baby's heart and organs making sure development was appropriate.
Insulin was injected into my belly by my husband because I was afraid I would hurt my baby and scared my baby was already hurt by diabetes. No education, no nutritionist was offered to me.
That sounds pretty traumatic...
Well, I gave birth naturally to an 8.9 lb baby who was healthy. But I had 34 hours of labor and a fistula operation six months later because that same gynecologist cut my vaginal rectum wall. I had no anesthesia for the grade 4 episiotomy because I was hemorrhaging so badly. My husband also did not receive the opportunity to cut our babies umbilical cord.
And you still had another baby?
Yes, one year later I was pregnant with our planned second baby. He was observed for eight months by my high-risk pregnancy doctor and she gave me insulin immediately when I tested positive for gestational again. That baby had to be a Cesarean birth because of the fistula operation. I also needed to be checked for five years to make sure the fistula remained healed because if not I would need a colostomy bag for the rest of my life. Thank goodness he was a healthy, happy 9-pound baby and completed our family.
When did you realize that you might have post-pregnancy diabetes?
At the age of 45, I began peri-menopause and diabetes symptoms. But with no education I didn't ask for a diabetes test till I was 50 years old.
I had diabetes symptoms for years but didn't put two and two together. I asked my gynecologist to test me for diabetes since I was frequently seeing him for peri-menopause problems. He kept giving me amoxicillin for a bladder infection prior to being diagnosed with type 2.
Any diabetes in your family?
My paternal grandmother had type 2 diabetes. Mom and dad had adult onset diabetes diagnosed at 70 and 84 years of age.
Do you use any particular tech tools to help manage your T2D?
Yes, I occasionally use the mySugr app. I communicate if I am low to my family and friends but always carry raisins with me and food. I update them when my symptoms of lows or highs change.
Diabetes technology has certainly changed over the years... any observations on the changes you've seen?
Pumps and CGMs are amazing tools and my hope would be that type 2's may someday be approved for coverage of both. Nothing would turn a T2 around in their thinking of diabetes like being encouraged to take it seriously with tools that could help them see and do just that. The advancement in technology for pumps and CGMs is incredible, and the Artificial Pancreas will be a life-saver when it comes to fruition.
In your Contest application, you mentioned that you have faced diabetes stigma firsthand...
Well, we all know that most people think we T2s give ourselves diabetes. Even type 1s that think so or not, treat us like second-class citizens who just make their walk with diabetes unbearable. The fact that they constantly have to explain they have the 'bad diabetes' or that they are even compared to a type 2 is difficult for them.
I personally have had to fight off people sending me or speaking to me about curing my diabetes with cinnamon, diet, turmeric or whatever else they just read is difficult. You know, even educating them is probably falling on deaf ears.
And people are judgemental about how you manage your illness as well?
Yes. Personally, I have been off my insulin for years at a time because I maintain good numbers with diet and exercise.
I remember one DiabetesSisters conference in particular where I so wanted to share my success, but at the same time didn't want to hurt my fellow type 2s or admit that in a room shared by many type 1s. I decided reluctantly to share the news since I am always open for constructive conversations that change the perception of diabetes. I was applauded, and suddenly some type 1s who wouldn't have spoke to me last year were asking me to dinner that evening and about connecting on Facebook.
Two years later we met there again and I had gained some weight back and was back on insulin. I was working outside the home again and just couldn't keep up with my boys' hectic sports life, working full-time, maintaining a home and cooking like I used to when I was home.
I shared my struggles, and those same gals did not converse with me that year. Not even a hello. Hurtful to say the least.
It is way more hurtful, belittling and disrespectful coming from a type 1 than it is from the general public.
Would you share your experiences with employment discrimination due to diabetes?
I worked in sales for a small company with approximately 50 people, and I consistently met my sales goals and exceeded them on a regular basis. I hadn't missed a day of work in four years of employment there and was never late. During November through January, we worked 12 hour days and ate our lunch and dinner at our desks, even though it wasn't allowed in New York but the owner preferred those long work hours to accommodate customers.
I'd been having issues for a couple years when I requested a test for diabetes from my doctor. They called me at work the next day and said I needed to get out of work immediately and go to the office because my glucose level was 875 mg/dL.
I waited an hour and a half, thinking this couldn't be a big deal. Finally, my Human Resources manager whose aunt and uncle had type 1 urged me to go. I did, and the doctor pulled me out of work for two weeks. My employer didn't tolerate people late or calling in sick. Despite my sales record and spotless attendance, their attitude changed drastically toward me. Come November, my doctor wrote a note stating that I should only work eight-hour days since my employer wouldn't allow breaks. My sales manager swore up and down at me that day. About six months later, I had some complications and was removed from work for two more weeks. When I returned I was fired.
Did you fight that decision?
I appealed three times before I was granted a hearing. I won unemployment benefits because they lied and said I was not making my sales goals but they had no documentation of that. I could have sued the company but was going through my helping mother, who had Alzheimer's and organizing placement for her, along with having young sons in sports so we were going every night in different directions. I just didn't have the time or energy to pursue a lawsuit.
That's a rough ride... How did you first get involved in the DOC (Diabetes Online Community)?
I discovered DiabetesSisters by accident on Facebook. Since then my diabetes world has opened up to all the wonderful organizations that educate myself and my group locally in Rochester, NY.
Can you share more about taking on a leadership role with DiabetesSisters?
I went to my first conference two months after finding them. They definitely changed my walk with diabetes. I was very ready to absorb and learn as much as I could and they were the perfect catalyst for that. I never got the level of education and information from my doctors that I got from DS.
Today and for the last six years, I have led the Rochester chapter of DiabetesSisters PODS group. These regional groups all across the country are provided with educational resources and monthly themes to focus on. We also offer encouragement, support and a "no judgment zone" in our groups. Women thrive better with their diabetes when they can gather monthly and discuss their issues and gain understanding and support.
What are some of the themes the women learn about?
They begin to understand for example that for type 2's insulin is not the enemy. It is your best friend if you need it. Type 2s are often told by their family doctors, PA's and even some endocrinologists to test once, maybe twice a day. That is ridiculous and sets the stage that what you eat and what your blood sugars are all day is not important. I try heavily to undo that in someone's mind, but when their trusted doctor tells them that it is very hard to undo.
I remember one lady came to our meeting as a type 2. After listening to her story for an hour I urged her to make an appointment with her doctor and ask for a C-Peptide test, as she did not sound like a type 2 at all. She came back to the next meeting very thankful after finding out that she was indeed type 1.5; the doctor changed her meds and she felt much better.
So peer support can really change people's lives?
Definitely! That's what is so rewarding about DS and it works both ways. We learn so much from each other and our bonds run very deep. I am a true believer that support groups such as DS should be endorsed and information given to each patient upon the diagnosis of diabetes. We do not compete with doctors like some places believe. We enhance and support the medical team's efforts.
To learn more and get involved, DS has also referred me to pharmaceutical companies, diabetes magazines, research firms such as PCORI (Patient-Centered Outcomes Research Institute) and just recently Boston University just to name a few.
What do you think we can all do to help more type 2s get involved the DOC and peer support?
I think the biggest reason more type 2 voices are not yet present in the DOC is that we are constantly told what a burden we are to the insurance companies and to society, and that we give ourselves the disease from overeating,
Some of the biggest enemies we have are type 1s. Many make it their main point in life to state they are not type 2's and how much more dangerous type 1 is compared to type 2. There is a wall built by type 1s and no amount of talk, discussion or pleading will ever change that for some people.
But I think we are starting to see more type 2's take a step up and share in blogs, write books and be more open to joining the diabetes conversations happening online. We need that desperately. It would be great if type 1s actively took an interest in type 2's as well. I honestly think we could learn so much from each other. We both suffer from the same complications and issues if we don't take diabetes seriously. Are we different? Absolutely... but treating us like second-class citizens only exasperates our issues publicly. I think standing hand-in-hand would serve both our journeys and change the conversations dramatically.
It would be great if some type 1s reached out to type 2s and encouraged their participation more.
It seems there are LOTS of opportunities for T2s to get involved in advocacys. Can you tell us about some of the efforts you've been involved with?
I travel as a patient on advisory boards, which are utilized by pharma, research companies and diabetes magazines. Most advisory boards have a very specific focus, such as one that I participated in on insulin-dependent people who've experienced lows. Some want to know about a day in the life of a type 2 patient who is dependent on insulin.
I've participated in efforts like this with PCORI, Healthline, Novo Nordisk, Boehringer Inglehiem, Healthlogix, Diabetes Forecast, Diabetes Health Monitor and a number of others.
I especially like the ones where I feel I can truly enlightened them. One surprisingly items was sharing that I know a few people who refuse to take metformin because of the side effects. Since I occasionally get bad side effects and omit taking it the day before and the day-of special events because of the same side effects, I told them that it is like having the stomach flu. Many women I know have continued to experience these bad side effects past the initial two weeks of first starting the drug.
What was the researchers' reaction to your honesty about drug side effects?
They made the comment that it was bizarre that people wouldn't take a drug known to actively help their chronic condition (?)
I explained that they feel would probably have the same hesitancy over feeling like they had the severe stomach flu every day while going to work. Would their employers be OK with them missing deadlines, meetings, reports, etc.? They completely understood then and were thankful because, first of all, they were not aware that people stopped taking drugs because of side effects, and they didn't even know specifically that it was very common for people on metformin to experience stomach upset.
What were some of your most positive sharing experiences?
Boston University was a wonderful experience where doctors, researchers, and patients gathered to discuss "Bridging The Chasm," which is a project I am still working on with them. It is about gestational diabetic patients who are later diagnosed with type 2. I was very excited about this because I mentioned it as a huge issue several years ago at a research firm, and now to see that it is being discussed, worked on and hopefully resolved within my lifetime is exciting!
Another time at a pharma company, the group had specific questions about how we felt when diagnosed -- from family reactions, to education from our medical team and everyday management and life with diabetes. There was a room with about 800 people present and it was it was also teleconferenced all over the world to their affiliates. They opened up the floor at the end to questions from the audience and several people asked about their husbands not taking care of their diabetes. What could they do to change that? I told them backing off and leaving them alone is being supportive. The more they nag, the worse it can be and they could be doing just the opposite of what they want to accomplish with their loved one.
What do you see as the biggest challenge in national diabetes care right now?
Equitable healthcare for all U.S. citizens and diabetes supplies at an affordable price for all diabetes types. Gestational patients should be tested once a year and their offspring should be tested by their pediatricians as well. Offspring should be educated on the importance of diet and exercise as a result of their predisposition to diabetes. This should have been basic medical care for gestational women 30 years ago.
Another big problem are deaths that still occur today in children or adults with undiagnosed type 1. Primary care physicians and pediatricians should receive diabetes education certifications on a regular basis. If that can't be done, I think a referral to an endo should be done upon diagnosis.Type 2s should be testing numerous times a day, be given a CGM upon request or immediately. And there should be clear education on how any blood glucose level over 180 is doing irreparable damage to their organs, etc.
From your POV, what can the diabetes industry do better?
Pharma could reduce costs of supplies and medications maybe with tax incentives.
Educate patients to test, test and test again. CGMs are expensive, but how enlightening would it be to give a T2 one so they can see their numbers climb and fall from what they eat and how proper exercise can be their ammunition to a healthier, happier lifestyle? Offer a list of support groups upon diagnosis and follow up with patients to see if they have gone.
How do you think we might offset the access and affordability crisis?
Tax incentives for pharmaceuticals, along with other incentives. Pharma companies should be rewarded for reductions in profits -- not rewarded for contributing to campaigns.
What are you most looking forward to at the Innovation Summit?
Honestly, I am very eager to just meet everyone and listen to others’ ideas, concerns and solutions.I'm excited about coming together with everyone to forge a common bond as a type 2.
Thank you for sharing your thoughts, Cindy. We are looking forward to seeing you in San Francisco this Fall!