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How to Stay Emotionally Connected During Social Isolation

In just a matter of days the world turned topsy-turvy. Last week I was in the Rhône Valley visiting vineyards for a work assignment with little access to world news. Then March 12 started a travel ban. We returned to the U.S. March 13. JFK Airport was eerily quiet at 5 p.m. when we arrived, usually a very busy time.

By Saturday, photos showed turmoil in the same location. Now we are hibernating at a time when we desire a joyful spring awakening, a week we usually go out to celebrate our wedding anniversary. Projects are on hold; three work trips for March and April are canceled. We are contemplating what’s next.

We accept life on pause. But it is disquieting. How do you process and cope with a situation that is changing by the day around the world and affecting so many people you know and work with? How do you manage anxiety creep? How do you feel less alone when your are socially isolating? What is the impact from all of this?

According to a 2017 report from Brigham Young University, social isolation can be harmful to your health, impacting physical and cognitive function, mental health and overall decline. Read this article “Social Isolation: It Could Kill You” from the American Psychological Association (May 2019) https://www.apa.org/monitor/2019/05/ce-corner-isolation.

Humans are naturally social creatures. Processing the directive to socially isolate is like telling us to wear our clothes inside out and shoes on different feet. We can do it, but it feels awkward and uncomfortable.

Here are some tips I hope will help

  • Go outside for fresh air. The days are longer and getting warmer. Being in nature will uplift your spirits and get you moving which increases your endorphins and helps generate a calming effect.
  • If you are working from home, which I do every day, create a quiet work space away from distractions to help you concentrate. Set aside a chunk of time to answer emails and check social media rather than throughout the day (unless that is your job). This will help you stay focused and be more productive.
  • If your mind is wandering, step away from what you are doing for a few minutes to reset. Try a five-minute movement break every hour. One of the advantages of working remotely is creating flexible hours to take advantage of when you feel more productive.
  • Manage the information you take in to avoid overload. The frenzy of news and social sharing is overwhelming. Limit television and social media screen times to specific times of the day and not late at night.
  • Call a friend at the start or end of the day to say hello. That person may also feel isolated. I try to call one person every day.
  • If your children are at home because schools are closed, this is a great time to do things together: read, cook, play games and music and limit all screen time. This is not the time to socially isolate within your own house.
  • Do something with your hands. I have friends who are quilting, cooking, gardening crafting and painting. I am not talking about doing chores; make it creative and enjoyable.
  • Finally, remember this: When the world seems complicated, try to simplify. When things feel unsettled, your life and activities may need to resettle a bit to adapt and adjust. There is help and support to stay calm amid chaos.

Inside the Patient Entrepreneur’s Mind: Ryan Stoll, PhD

Ryan Stoll Inside the Patient Entrepreneur's Mind

Managing a chronic illness is challenging, whether it is your own or a loved one’s. Starting and running a business also poses unique challenges. If you struggle with a chronic illness, have started a business, or want to start a business, this blog series can help guide you. “Inside the Patient Entrepreneur’s Mind” offers key insights into chronic disease and mission-driven entrepreneurship by some of the most innovative patient entrepreneurs in the world. 

Ryan Stoll is the Founder of COMPASS for Courage. 

As a patient entrepreneur, can you describe your personal connection to anxiety/depression and how this experience drove you to innovate the space?

I think there are two sides to this connection and the first is definitely the personal side. As a child and teen, I struggled pretty significantly with anxiety that was mostly social anxiety, self-doubt, and chronic worry about whether what I was doing was good enough. I felt the weight of overall anxiety and was suffering in silence, not necessarily realizing that what I was going through at the time was clinically dubbed as ‘anxiety’ AND something could’ve been done about it. That carried on pretty significantly throughout college. It took me away from social interactions because I was just too anxious to be around others (not that I didn’t want to connect). I took a job working nights at UPS and took all of my classes online. I stuck with my core group of friends that I had and pulled myself out of other situations to placate my anxiety. As that progressed, it was really when I shifted my career from art to psychology and got involved with the Courage lab (which I am still a part of today) that I started to get exposed to research and how we can address anxiety. I saw not only how I could help myself but also how I could help other kids who are in the position I was in as a child. These findings led me to attend grad school and specialize in focusing my effort on understanding anxiety in children and teens. Specifically, not so much as to how anxiety starts and why it sticks around but rather, how do we prevent it from happening in the first place. It is important to remember that anxiety is also a normal emotion. You can’t get rid of anxiety like you can’t get rid of your happiness. It’s all part of an experience that you can effectually manage and prevent from getting out of control. That being said, COMPASS for Courage came out of my own personal experience, my time as a researcher, and what was happening in my lab.

What makes COMPASS unique and how does it meet an unmet need of the anxiety community?

Obviously, beyond the prevention side of things and focusing on children and adolescents, what makes COMPASS unique is it is a true evidence-based intervention. It evolved from scientific grants years ago to what we have today, which is essentially taking 30 years of science, streamlining it, gamifying it and offering it to today’s youth. When we look at what is available on the market for anxiety, most of it is treatment-focused, teen/young adult-focused, or expensive, time consuming and challenging to use. Accessibility and ability to purchase is also an issue. With COMPASS, I’ve been able to remove a lot of these barriers to create something that is fun and leads to a better life for children.

We train school mental health providers and COMPASS is offered through the school beyond the classroom. Because this is prevention, we are preventing anxiety disorders at the first sign of suffering. We have to determine how high an adolescent’s anxiety is presently and if it is at a level that if we don’t do anything today it will become a disorder. In other words, they are on the trajectory towards an anxiety disorder later. We are in the business of courage building instead of anxiety reducing that we classify as strength-based, instead of weakness-based, intervention.

Are there any other unmet needs of the anxiety community that you think should take priority in working to address? How are patient entrepreneurs well-suited to meet these needs?

I think right now the biggest unmet need is human capital to actually support people and help them advance to improve their anxiety or other mental health problems. There is such a lack of trained mental health professionals in comparison to the number of people who need support. It isn’t just increasing the products or solutions that entrepreneurs can provide in the space that is needed, but also enhancing the number of licensed professionals. If we don’t have people to deliver these products and services, we can’t have the impact in reducing the consequences and burden of anxiety and mental health as a whole. Although at COMPASS we are already involved with individuals that are licensed mental health professionals, we are expanding it to individuals who can provide support without going to school for 8 years. We are doing this by transferring what we’ve learned in the world of science and research to individuals already providing support like parents, teachers, etc.

In terms of how patient entrepreneurs are well-suited, being that we have typically struggled with the target issue, we have a very unique perspective in terms of what is needed and where the gaps in care are just from our own experience. We have something you wouldn’t necessarily see or go through if you just want to innovate from the outside without going through it yourself. Having a deep understanding as an entrepreneur as someone who struggles with it and studies it professionally, we are well positioned to leverage our personal story to affect change beyond our personal communities.

Where do you draw your inspiration and motivation from to keep forging ahead as an entrepreneur in the healthcare industry?

It can be tough when you are trying to pitch someone prevention when the place you see ROI comes further down the line through the outcomes. My research team, my graduate mentors and advisors push me because they believe in what I’m doing. I’m able to tap into that belief in me to push forward in what I’m doing when investors say no. Additionally, my wife is absolutely an inspiration and believes sometimes even more deeply than me in what I’m doing. I also draw inspiration just internally and reflect on my own experiences. Really, being in a position of having my PhD and extensive experience in the research world as well as in entrepreneurship I’m in a position where I can really affect change. Specifically, what I experienced as a child with anxiety doesn’t have to happen to the kids of tomorrow. This sentiment helps me when I’m frustrated and discouraged with the process of being an entrepreneur by focusing in on the big picture. As much as COMPASS is part of that vision, it’s just one example and the bigger picture of increasing access to mental health care and whatever it takes to do that is what I tend to draw from and push forward with.

Lastly, what do you do for fun to manage the stress of running a business as both a person with a personal connection to anxiety/depression and an entrepreneur? Do you have any similar advice on work-life-disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community?

What do I do for fun? That’s a great question. It’s kind of interesting because as an entrepreneur when you’re focused on a goal bigger than yourself it tends to overwhelm your life. I definitely listen to a lot of music and keep it going most of the time while I’m working to keep the energy up. What I really do for fun to unwind is art. Well before I was a doctor, researcher and entrepreneur, I was a designer and photographer. That was my first passion in life and my major in college was art before switching to psychology. I tend to do that more now to manage stress than I had done in the past. Music, art, and hanging out with my cats and wife all definitely reduce some of the stress and turns down the hype. As an entrepreneur, nonstop worry and thinking also requires a space to turn my brain off and not react to anything that’s going on for a little while. I’ve started meditation recently for this purpose. It is important to keep in mind that this work as an entrepreneur in the healthcare industry, furthermore mental health which is more challenging, is really hard. It is okay to struggle and feel like you’re not producing enough. It is okay because this is really hard work and it’s challenging but so fulfilling. It is keeping that in mind and not letting the anxiety and self-doubt that comes with running a business prevent you from actually doing it.

Ryan Stoll Artwork

Inside the Patient Entrepreneur’s Mind: Chris Molaro

Chris Molaro Inside the Patient Entrepreneur's Mind

Managing a chronic illness is challenging, whether it is your own or a loved one’s. Starting and running a business also poses unique challenges. If you struggle with a chronic illness, have started a business, or want to start a business, this blog series can help guide you. “Inside the Patient Entrepreneur’s Mind” offers key insights into chronic disease and mission-driven entrepreneurship by some of the most innovative patient entrepreneurs in the world. 

Chris Molaro is the Co-Founder and CEO of NeuroFlow. 

As a patient entrepreneur, can you describe your personal connection to mental illness discussing diagnosis through current daily management and how this experience drove you to innovate the space?

Like everyone else in this country, I have been personally touched by mental health issues. Unfortunately, almost all of us have someone we care deeply about that has been through challenges related to depression, anxiety, PTSD or another issue of the like. In my experience, I led soldiers in the Army, where I watched many of them struggle with trauma-related issues, and it has been my mission ever since to make sure patients have improved access to care and can engage with evidence-based treatment.

What makes NeuroFlow unique and how does it meet an unmet need of the mental illness community? 

NeuroFlow bridges the treatment divide, helping non-behavioral health specialists better assess and design appropriate treatment plans, and then coordinate that care more efficiently.  We complement the care coordination and collaborative care aspect of the platform with an engaging patient app for remote monitoring and to allow for 24/7 access to evidence-based protocols and education modules.  This data is synthesized by AI algorithms and sent back to the care team for real time monitoring and risk stratification.

Are there any other unmet needs of the mental illness community that you think take priority in working to address? How are patient entrepreneurs well-suited to meet these needs? 

I believe it is all about making sure that the patients engage with these tools and feel like they can trust the system and that it will work for them.  It may seem obvious, but patients are very different. A military patient is different from a high school student and they’re both different from a mother of five. Acknowledging patient individuality, they all respond differently to different types of content, coping mechanisms, designs, etc.  Patient entrepreneurs can lead the way in advocating for the end-user of these tools making sure that the solution being designed and built will actually be useful to unique patient users and accomplish its goal.

Where do you draw your inspiration and motivation from to keep forging ahead as an entrepreneur in the healthcare industry? 

20 Veterans a day commit suicide. 67% of the 50 million people in this country that struggle with mental illness never receive treatment.  These are huge and important problems to solve.  It’s easy to draw motivation when you’re mission driven by these large public health issues.

Where do you see NeuroFlow headed in five years? 

October of last year (2018) we had 2,000 patients invited to the platform.  Today, we have over 20,000.  We have expanded across 18 states and our platform is used by over 750 providers.  We want to ensure that anyone that could benefit from access to mental health resources can get them and no longer feel ashamed for doing so.

Lastly, what do you do for fun to manage the stress of running a business as both a person with a personal connection to mental illness and an entrepreneur? Do you have any similar advice on work-life-disease management balance to others out there thinking of starting a business to meet an unmet need of a chronic disease patient community? 

I love the outdoors, so I go for runs, hike, kayak – anything where I can enjoy the fresh air and get exercise.  The only advice I would offer fellow budding patient entrepreneurs is to take time off from work (obviously) but to also be deliberate with your time off work.  As entrepreneurs, your time is extremely valuable, so you shouldn’t waste a minute. If you are taking a few minutes to relax, make sure you actually get to relax during that time.

#RealT1DLyfe Chris’s Story: Type 1 Diabetes and Suicide

As anyone with Type 1 diabetes knows, life can be an absolute roller coaster. I would like to take you on a personal journey of mine going into the darkest of hours, but coming out in the brightest of days. Back in June of 1988, my diagnosis marked not the first or second, but fifth Type 1 diabetes diagnosis for my family. Already having lost an uncle to Type 1 in the same year, my diagnosis likely hit my family harder than I will ever know. However, growing up having two family members who passed from T1D complications weighed heavy on my mind. It didn’t help that at a young age, I heard a doctor tell my mother, “if he sees 30, feel lucky.” Growing up, T1D never completely stopped me from doing things, but often had a way of interfering. Going to play soccer as a kid, I had a coach say I couldn’t play because he didn’t want a kid dying on his field. Name calling, being told I wasn’t good enough, and the like made me angry in the moment, but ultimately sat deeper within my subconscious for twenty years into adulthood, slowly taking its toll.

Getting out on my own is where my life took a darker turn. Around 2011, I fell into a deep depression and I almost didn’t make my way out. My blood sugars were rarely where I needed them to be. It was also a constant roller coaster at work. Eat then work, forget to bolus, go high, then crash, and repeat. Although I was consistently out of range, my reasonable a1c kept my doctor at bay, all while hiding the fact I was miserable mentally. Relationships were impossible to maintain with my depression and blood sugars as they were and I began to isolate myself alone with my thoughts. The thoughts escalated from “your diabetes has destroyed your life” to “your life isn’t worth living with diabetes.” Mind you, at this point in time I already had one beautiful son. I pushed the thoughts back as much as I could for his sake. However, in doing so it enabled my thoughts to escalate even further. I was telling myself that my son would be better off without a father. I started looking up those who completed suicide and how they did it. However, even with everything I was feeling, I couldn’t leave my family with the thought that I would do so on purpose. After having crashed my blood sugars numerous times over the years to counteract extreme highs, I decided insulin was my best option.

On a Saturday morning, I woke up in tears and decided that was the day. I got up and took a fatal dose of short acting and went about my morning routine with the idea that at some point, I would have an insulin reaction and go unresponsive. For whatever reason, by an act of God, the insulin took hours to work. Later that day, when I was on line to have lunch, the last thing I remember was reaching for a plate. I woke up surrounded by EMTs in my manager’s office. Lucky for me, the guys I worked with knew me and my diabetes very well. Upon coming to, one of the EMTs said it was the first time he had a patient so low it wouldn’t read on his meter. We still don’t know how low I truly was when they got there. I finally got to the point I could stand on my own and was feeling okay physically. However, my mental state was still in shambles. Per policy at my work, I had to be sent home. I begged with my manager to let me stay. I said “I’ll just sit in the back, no one will know I‘m there.” I couldn’t go home in the state of mind I was in. But none the less, I was on my way home. The short 5 minute drive was nerve racking, tears falling, thinking “should I try again” and “I can’t be alone” and “I don’t want to live.” My best friend was sitting on the couch as I walked into my apartment and he immediately looked up at me, knowing something wasn’t right. He put his arms around me, like any brother should, and gave me a much-needed embrace–the kind of hug that lets you know someone loves you. We ended up going for a long walk where I explained what I did. He was the only one who knew what I did for years. During our walk he said, “I know the greatness you have ahead of you, you just have to be here to find it.” His words have sat with me for years.

With my two children and the Betes Bros, I have a family that pushes me to succeed. Brothers who reach out for my support as well as check on me. The men and women who have come into my life have filled my cup and continue to make life even better. If you are struggling, that is okay. As someone who almost experienced an end to my life, if I had the support then that I do now, I probably wouldn’t have gone that far. If you’re ever in a place like that in your life, talk to someone. Seeking a professional counselor doesn’t make you weak, it actually makes you stronger. Reach out to a friend who may be struggling that you haven’t talked to in a while, let them know you’re there. A simple text, note, message saying, “I’m here if you need me” can literally save a life.

#RealT1DLyfe Chris Pickering Family

Get real with T1D! #RealLyfe

For additional resources on Depression and Diabetes, check out this article from our friends at Diabetes Daily!

Lyfebulb and UnitedHealth Group Launch Second Annual Innovation Challenge for Patient Entrepreneurs

Lyfebulb and UnitedHealth Group Launch Second Annual Innovation Challenge for Patient Entrepreneurs

  • Challenge aims to inspire patient-driven innovation in the management of depression and anxiety
  • Finalists will compete at UnitedHealth Group headquarters for a chance to win $25,000

group image for UnitedHealth Innovation Challenge

MINNETONKA, Minn. and NEW YORK, May 13, 2019 /PRNewswire/ Lyfebulb LLC and UnitedHealth Group (NYSE: UNH) invite patient entrepreneurs to compete in “Empowering Patients: An Innovation Challenge,” for the second annual Lyfebulb and UnitedHealth Group Innovation Award.

This year’s challenge will recognize the top patient entrepreneurs developing innovative ideas for better management of depression and anxiety using health care information technology, medical devices, diagnostics, consumer products or services.

UnitedHealth Grouup logo

Eligible companies are those that are founded or led by a patient entrepreneur: someone who has been personally affected by depression or anxiety (themselves or through a loved one) and who develops a product or service to address an unmet need identified through personal experience. Companies based in the United States or Canada (excluding Quebec) are eligible to apply. The application, detailed rules and eligibility criteria can be found at click here. Applications are open until 11:59pm EST on May 31, 2019.

“Depression and anxiety are issues that particularly affect people living with chronic disease,” said Dr. Karin Hehenberger, founder and CEO of Lyfebulb. “We are honored to work with UnitedHealth Group on an issue that affects so many people in our community and nationwide. We are eager to tap into the unique insights that patients have, and leverage those to identify user-driven solutions by patient entrepreneurs for issues they face.”

A joint steering committee composed of Lyfebulb and UnitedHealth Group executives will conduct a thorough sourcing and screening process, and select 10 finalists who will be invited to the Empowering Patients event July 23-24, 2019, at UnitedHealth Group’s headquarters in Minnetonka. There, the finalists will pitch their solutions to a panel of experts (a jury) from the business, medical and patient communities. The jury will award a $25,000 prize to the company with the most innovative and impactful solution at the closing ceremony.

“Depression and anxiety weave through all areas of disease – chronic and acute – yet they are understudied and underserved in terms of dialogue and solutions today in the United States,” said Gene Baker, Ph.D., a research fellow at UnitedHealth Group. “We are grateful for the opportunity to partner with Lyfebulb and look forward to hearing from patients and entrepreneurs to learn more about the innovative, patient-driven solutions to help people living with depression and chronic disease.”

About Lyfebulb
Lyfebulb is a chronic disease-focused, patient empowerment platform that connects patients and industry (manufacturers and payers) to support user-driven innovation. Lyfebulb promotes a healthy, take-charge lifestyle for those affected by chronic disease. Grounded with its strong foundation in diabetes, the company has expanded disease states covered into cancer, inflammatory bowel disease, multiple sclerosis and depression/anxiety.

See www.lyfebulb.com, Facebook, Twitter, Instagram, Karin Hehenberger LinkedIn, and Lyfebulb LinkedIn.

About UnitedHealth Group
UnitedHealth Group (NYSE: UNH) is a diversified health care company dedicated to helping people live healthier lives and helping to make the health system work better for everyone. UnitedHealth Group offers a broad spectrum of products and services through two distinct platforms: UnitedHealthcare, which provides health care coverage and benefits services; and Optum, which provides information and technology-enabled health services. For more information, visit UnitedHealth Group at unitedhealthgroup.com or follow @UnitedHealthGrp on Twitter.

Contact:

Lyfebulb
Karin Hehenberger, M.D., Ph.D., CEO
917-575-0210; Karin@lyfebulb.com

UnitedHealth Group
Tyler Mason
424-333-6122, tyler.mason@uhg.com

Chronic Illness & Anxiety: A Chicken & Egg Scenario

Anxiety and depression are prevalent for those who suffer from chronic illness. In fact, one study found that 40% of Inflammatory Bowel Disease (IBD) patients had abnormal anxiety levels and this drastically increases to 80% when the patient is in a flare-up . With chronic illness typically, there is a feeling of loss of control over your own life which can in turn cause stress, anxiety and depression.

Chicken or Egg?

I was diagnosed with IBD 9 years ago and while I have learned to (mostly) manage the symptoms of my disease over time, I have yet to master the feelings of worry and anxiety. After having a bowel resection surgery, I have been in clinical remission but not without its bumps along the way. The fear of the unknown can do a number on one’s mental health. The possibility of a flare-up always lives in the back of my mind. I can remember the countless visits to the hospital, procedures, medications, and extreme pain. I was barely able to take care of myself, and now that I have children, I worry that if I were to have a flare-up, I wouldn’t be able to take care of them or participate in their lives in a meaningful way.

I know that having a chronic illness has increased my anxiety levels, but does stress and anxiety exasperate my symptoms? Research shows that stress can worsen symptoms and cause a relapse of remission. From WebMD “When someone is under stress, the body gears up for a fight-or-flight response by secreting certain hormones, including adrenalin, as well as molecules called cytokines. They stimulate the immune system, which triggers inflammation. In people whose ulcerative colitis is in remission, this sets the stage for the return of their symptoms, known as a flare-up.” This is something I’ve experienced and heard from talking to fellow chronic illness sufferers. Lack of quality sleep and environmental stressors have often caused a revival of symptoms which can be a slippery slope to a full-on flare.

Anxiety definition (from Merriam-Webster):
an abnormal and overwhelming sense of apprehension and fear often marked by physical signs (such as tension, sweating, and increased pulse rate), by doubt concerning the reality and nature of the threat, and by self-doubt about one’s capacity to cope with it.

Stress definition (from Merriam-Webster):
constraining force or influence: such a physical, chemical, or emotional factor that causes bodily or mental tension and may be a factor in disease causation
Anxiety = Fear

When speaking about Generalized Anxiety Disorder it is often associated with people who have irrational fears or worry for no reason. When talking about sufferers from chronic illness, often the anxiety is derived from perceived AND real fears. From my experience, my anxiety stems from a fear of a past trauma reoccurring. Fear of pain, a flare-up, of being out with no access to bathrooms. Fear of foods and eating, procedures, fear of damage caused by long term use of medications (i.e. Remicade can cause an increase in cancer). Fear of missing work, fear that people don’t understand, fear of drug/procedure costs and benefits coverage. This can be scary stuff and can plague your thoughts even when in remission.

From diagnosis to remission the fear still exists, it just changes in size and scope. A newly diagnosed patient can go through stages of grieving and without having the tools to manage the illness it can be very scary. Fast forward to remission, chronic illness has many layers and can be unpredictable. No matter how much you’ve done to manage your illness, there is still a possibility you can have a relapse. The feeling of helplessness can trigger depression, but on the flip-side depression can slow recovery. This begets a vicious cycle which can be hard to get under control.

Coping Physically and Mentally

Patients must cope with not just the disease itself but the mental health side effects of it. While I believe I’ve received excellent care from my Gastroenterologist, he deals with only clinical IBD symptoms so often the mental health aspect of the disease gets overlooked. It is important to bring up your emotional health to your doctor when suffering from a chronic illness despite the perceived stigma. Having that aspect under control could potentially help with physical symptoms. Anxiety and chronic illness can be a chicken and egg scenario where consideration must be given to both to have a holistic treatment plan.

Strategies for Coping With Anxiety:

Find your support: whether that be a close friend, family member, a fellow patient, or support group like Lyfebulb, knowing you aren’t in this alone makes a world of difference.

Don’t assume the worst: challenge those negative thoughts! Remember that you have survived thus far, and all those experiences make you stronger.

Try yoga, meditation, or deep-breathing:  Research has shown this to be an effective complementary therapy for patients with IBD.

Seek counseling – an impartial third party can help instill coping techniques

SOURCES: [Sharma P, Poojary G, Dwivedi SN, Deepak KK. Effect of Yoga-Based Intervention in Patients with Inflammatory Bowel Disease. Int J Yoga Therap. 2015;25(1):101-12. doi: 10.17761/1531-2054-25.1.101. ]
Cannabis is an increasingly popular therapy for IBD with cannabidiol (CBD) showing promise as an anti-inflammatory and tetrahydrocannabinol (THC) as a pain reducer and sleep-aid. [Ahmed W, Katz S. Therapeutic Use of Cannabis in Inflammatory Bowel Disease. Gastroenterol Hepatol (N Y). 2016;12(11):668-679.]

– Krystal Laferriere, Lyfebulb Ambassador (Instagram @xtra_ordinary_girl )

Diabetes and Depression

Diabetes and depression is a topic I feel strongly about, but also one that is not easy to discuss. Many people with diabetes and relatives to those with diabetes do not want to acknowledge the psychological issues one can have when living with diabetes. These issues are not only related to the fact that diabetes is a chronic disease, that one has to inject insulin to survive, and that one has to modify diet, exercise, relationships etc etc.

In fact, John McManamy, author of “Living well with depression and bipolar disorder” says that a Kaiser Permanente study of some 1,680 subjects found that those with diabetes were more likely to have been treated for depression within six months before their diabetes diagnosis. About 84% of people with diabetes reported a higher rate of earlier depressive episodes. He goes on to say that a 2004 Johns Hopkins study tracking 11,615 initially non-diabetic adults aged 48–67 over six years found that ‘depressive symptoms predicted incident Type 2 diabetes. Women, in particular are at greater risk, according to other studies; and another study shows that this risk, among both men and women, persists even after controlling weight, caloric intake, smoking, and economic factors.

It has clearly been shown that depression is higher in people living with diabetes, and that this differs from other chronic disease. It is also clear that the depressive tendencies people struggle with are exacerbated by volatility in blood sugar, and can be reduced when control is improved. I recognize this, since I know that when I was “high” I felt tired, lethargic and often hopeless. This would lead to thoughts not moving fast enough, and frustration with my own capacity as a thinker. I would be sad about small things and be emotional about events that otherwise did not bother me. The worst part of depression triggered by blood sugar volatility is the feeling of loss of control and the vicious circle triggering poor management of diabetes which makes both the physical problems and the psychological issues worse!

My recommendation is as always to try to stay in control and when you do slip, ask for help! Being alone with your disease is the worst, and the concept of peer-to-peer mentoring helps, especially with more emotional issues than with medical and physical details. It is hard for a doctor or a nurse to understand the sense of hopelessness, fear of complications and the loss of control that we feel at times when living with diabetes. This is when a friend who also has the disease can help you tremendously by bringing you up in your mood, and down from the rollercoaster of sugar.

My other piece of advice is to reduce the simple carbs in your diet– it really helps you control the volatility. As you may have seen in children without diabetes, their mood is seriously affected by high sugar meals, and the subsequent crash is hard on parents and caretakers.

Lastly, exercise creates a natural surge in anti-depressive hormones such as serotonin and endorphins so adding exercise to your daily regimen will reduce the risk of depression.

I had a pancreas transplant in 2010, and since then my HbA1c has been normal with few glucose excursions. My mood and my energy levels have improved dramatically, but yet, when I eat a carb-loaded meal (rarely!) I do feel a high in the beginning, but then I dip and I lose my mojo. I feel lost and without control. I may have solved the sugar highs, but I am still vulnerable to lows in sugar and that is still my trigger for also feeling low in my mood.

Sugar is evil and I hope that in the future children will not be fed high-sugar meals and handed candy as rewards – it kills, mutilates and makes you sad!

Image of a woman siiting curled up on the ground

Diabetes and Mental Health

It’s something that always goes together. It’s something with many factors. It’s something that you never get a break from. It’s also something that isn’t often talked about or factored into everyday care. It’s splattered with stigma, stereotypes, shame, and silence. Well, it’s actually two somethings. It’s type 1 diabetes and mental health.

Type 1 diabetes and mental health very often impact each other one way or another. Type 1 diabetes and mental health impact everyday life, but everyday life also impacts the two. You can never take a vacation from type 1 diabetes and mental health. It’s a rare event when mental health is factored into diabetes care. You see the stigma, stereotypes, and silence around type 1 diabetes and mental health constantly, but it’s also accompanied with silence and shame.

This all very much so applied to me for the majority of my life doubled with the fact that in my mind I could only be positive about type 1 diabetes and the fact that I had had few good experiences with counseling. In my mind, I was invincible ever since I was diagnosed at 7.

But soon that all changed- compounded with many years of living with type 1 diabetes, my studies in Social Work in college, my involvement in the diabetes community online and in life, hiding from the past and things I didn’t want to deal with, and the fact that I was going a million miles an hour with limited self-care.

Diabetes Burnout hit me with full force my junior year of college. I had faced a wall that for the first time I couldn’t climb over or burst may way through. My Diabetes Burnout lasted for months and under a cloak of silence and shame. I searched for information- I found some resources that didn’t seem a right fit for me, and I found almost no “me too’s.” I did however discover how wonderful and beneficial counseling was.

I came out of it eventually, but I was very different when I did. My thoughts on mental health were the biggest change for me. Self-care immediately became a regular part of my routine. I yearned for more me too’s, and eventually I made it my goal to be more honest not just to myself, but to the outside world about mental health, but especially mental health and diabetes.

My senior year of college came, and towards the end of the year so did a triple diagnosis of ADHD, Anxiety, and OCD. All of which apparently presented before the age of 12, but it was missed duee to the focus on diabetes and my mistrust of healthcare providers.

So again- something changed. With that change, so did my blog.

I’ve shared versions and bits of this story before in print and in person. Especially because only a few people probably wear their mental health on their sleeve.

But I hope for things to change. I hope for a diabetes community that doesn’t call burnout giving up. I hope for more research. I hope for a day that mental health isn’t a joke, that diabetes isn’t a joke, and especially that the two together are not part of jokes.

The truth of the matter is that I live with type 1 diabetes, ADHD, OCD, and Anxiety, but that is just a part of who I am. But these parts are very much together with other aspects of my life.

I have to check my blog sugar and give insulin many times during the day, and battle the OCD that begins to obsess over my continuous glucose monitor. I’m figuring out how to navigate ADHD and anxiety in the workplace. I’m still learning my triggers and figuring out what works for me.

And to be perfectly honest, this is mostly for me- a part of my self-care- I am not great at verbalizing how I feel- especially if those emotions aren’t positive, but I can do it through writing.

But I can’t lie when I hear or see someone say “me too” or I thought I was the only one- because it’s a nice reminder to keep doing what I’m doing, but it’s also a reminder that I am not alone.

Social information-

Instagram and twitter: @mindy_bartleson

Blog: https://mindydiabetes.wordpress.com/

Facebook Page: https://www.facebook.com/theresmoretothestory/

 

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