Thank you to the Children With Diabetes organization, which puts on the Friends For Life conference, for allowing us to join in their exhibit hall once again this year. It is always an honor to share and amplify the stories of our community, and help any person living with diabetes feel a little less alone.
In the month of May, You Can Do This Project is sharing personal stories from people discussing how they balance the management of both diabetes and their mental health. Earlier this month we published a group video on the topic – if you missed it, check it out here.
Today, we hear from Leann.
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Any time I see awareness raised in the news or on social media about the mental aspects of living with diabetes it gives me hope. Every time we find the honesty and courage to talk about the emotions and thoughts of living with diabetes, I’m reminded that I’m not alone. Mental health is a fundamental base to build physical health. If I’m overcome with frustration and depression, my choices may make the most expensive pump/meter/cgms combo ever invented useless to me. I never signed up for this disease, and I certainly can’t be a “Perfect Pancreas”.
In the past I believed that if I were perfect, I would never have to feel shame from my doctor for “bad” blood sugar readings. I thought that the power of perfection would protect me from the fear of complications and that it would be easy to talk to family and friends about my daily struggles.
Now I know, not only am I not perfect, but that is not a useful or worthy goal. I do my best now and sometimes I have to define “best” in different ways at certain moments. I have to decide whether I want to trade the opportunity for the real joy of being alive now to live in a self-imposed bubble instead. I have to weigh the work and the rewards in the choice to balance a week of healthy eating with an enjoyable night out with friends. I can’t let my avoidance of judgmental people force me out of spending time with others.
What I have come to find is that willingness and acceptance are my favorite tools if I want to find balance. Willingness gives me the energy to keep trying, even when I find myself frustrated by a string of lows. While I may be miserable, tired, or cranky in the moment, willingness reminds me that this is not supposed to be easy, but in each of those moments, I have a choice. I can afford to quit trying for only so long before consequences catch up with me. In each moment, I can choose to be willing to really look at what I’m doing and what I value in the long run. I can try to make the best choice in that moment.
Acceptance means that I don’t have to like the fact that I need to make these decisions, but I can be kind to myself while doing them. No, it’s not fair that anyone has this disease. It certainly isn’t fair to receive the amount of stigma and shame that we sometimes do from others and even ourselves. But beating myself up or punishing myself does no one any good. Mentally, the worse I feel, the worse I do. When others think that shame is a great motivational tool, I am reminded that the unpredictability of this disease can cause others to grasp at illusions of control in order to feel safe themselves. There is no safety found in shame. When I see others talking about what really helps us emotionally, I have hope that the result will be more people who are understanding and supportive.
Leann Harris has lived with type 1 diabetes for 14 years. As a Positive Psychology Coach for people with diabetes at Delphi Diabetes Coaching, she focuses on the mental fears and emotional challenges of thriving with diabetes.
We continue to highlight the link between diabetes and mental health (in observance of Mental Health Awareness Month) by featuring the personal stories of people in our community. Earlier this month we published a group video on the topic – if you missed it, check it out here.
If you’d like to write a guest post about how living with diabetes impacts your mental health, please send us an email.
Today we’re proud to share this post from Ciwi.
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I was diagnosed with type 1 diabetes in 1996, when I was eight years old. I remember crying in my doctor’s office when he said I needed to go to hospital, because I was sure I needed surgery and would probably die. Fortunately, I found out that that was not the case.
During my high school years I struggled a lot with my mental and emotional well-being. I struggled just being around people, my self-esteem was non-existent, and my schoolwork suffered a lot. My glycemic control suffered even worse – I felt useless, so why should I care about my health? I felt I would just fail at it, like everything else, yet again.
I felt so helpless and like I couldn’t find support or tell anyone what I was struggling with, so I somehow never thought finding help would be an option. I never sought out a counselor or a doctor, or even a friend.
What I didn’t know in those years is that health is so much more than just your physical state, and that it is a dynamic state between your body, mind and spirit. Sure, there were many other factors that contributed to that feeling of uselessness, but what I didn’t know then is that my diabetes was a major contributor to my mental health.
A review conducted in 2000 concluded* that diabetes as much as DOUBLES the odds of depression. As many as ONE OUT OF THREE of the individuals participating in the studies had depression at a level that impaired their functioning and quality of life, including their ability to stick with whatever medical treatment prescribed to them by their doctor (insulin, oral medicine, carb counting, exercise) to better their glycemic control, and therefore increasing the risk of diabetes complications.
As I’ve grown older, I’ve become stronger. I’ve traveled the world, I found a passion for life and what I can do with it, I’ve met the love of my life, and we’ve started our own family. But I still have days when I feel like that helpless teen, and there are days that are really difficult to even just get through. Luckily, I now know that the feeling of not being as mentally strong as most people isn’t something that is abnormal, as diabetics we’re coping with a lot more than the average person!
I also realized that it is not something that needs to hold me back.
Let that sink in.
It does not need to hold us back.
We need to stop comparing ourselves to other non-diabetic individuals, because we are a whole lot more! We need to be a community that lifts each other up, that lend a hand to our fellow diabetics when burnout strikes and we’re just done with diabetes.
We also need to dare to love ourselves, through our feelings of failure.
We need to speak more of mental health and diabetes, and normalize the normality of it. While the same studies as above showed that successfully treating depression was associated with better with great improvements in glycemic control, two of every three cases of depression are left untreated by primary care physicians!
We need to be advocating for ourselves. To our physicians, to our diabetes educators, to our communities, to our families. We need to dare to find our voices, to let the world know that while we “don’t look sick at all” on the outside or may look “just fine”, there’s a vast range of risk factors on our inside just prowling and waiting to attack.
And while struggling with your mental health is normal, my friend, it’s not something you have to struggle with alone. Help is out there. Your doctor, a nurse, a diabetic educator, a friend you trust, a counselor at your school or church. We are all here for you.
You can do this.
Ciwi was born and raised in Norway, and is now living in beautiful Australia with her husband and three-year-old son. She is a full time stay at home mama and a nursing student, both which she loves doing. Ciwi shares her life with diabetes on her blog, The Honey Siphon.
*Source citation: Anderson, R. J., Freedland, K. E., Clouse, R. E., Lustman, P. J. (2001) The prevalence of comorbid depression in adults with diabetes: A meta-analysis. Diabetes Care, 24, 1069-1078. doi: 10.2337/diacare.24.6.1069
Living with diabetes affects our mental health in a number of ways – but instead of us trying to tell you that, we’d prefer to let some members of our community do the talking. Earlier this month we published a group video on this topic – if you missed it, check it out here.
For the remainder of Mental Health Awareness Month we’re honored to host some personal stories from people who balance diabetes management alongside mental health management. (And we’d be glad to share your guest post, too – send us an email.)
Today, we hear from Shannon.
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I was dx’d with T1D in 1992, one month before my 18th birthday. I was technically too old for my mom for to manage it FOR me, yet too “young” to properly know how to manage it myself. But somehow I did manage, because here I am almost 22 years later, still doing well.
I delivered twins via c-section in April 2013 (I also have a 6 yr old son) and a few months after having the twins … I started to notice something was off. I was sad. I worried. A LOT. I would tuck my 6 yr old into bed at night and lay in his bed and cry. I always felt like I was telling him goodbye instead of goodnight. I would hold my new babies and be sad. Just sure that I would not be here to watch them grow up. I was sad for myself and for them, thinking why did I wait so long to have children? (even though I’m not THAT old… but you’ll see where this is going … )
My mind would frequently go to places like “you’ve been diabetic for over 20 years. Remember all those times you didn’t take care of yourself, or those 3 times you’ve been in DKA, or those times you forgot to take your blood pressure meds? It’s just a matter of time before you have a heart attack.” Bam. Those words right there kept echoing over and over. I had convinced myself I was going to have a heart attack, due to living with this disease for so long. And I was just sure it was going to happen while my husband was traveling, then my mind of course went to even worse places, worrying about what would happen to my boys if it happened when I was home alone? I started showing my 6 yr old how to call my husband and my mom. Even changed their names in my contacts to be what he called them, and also added “ICE” to their contact names.
It got so bad that I started missing out on special moments with my boys, because all I could think about was me dying.
When the twins were about 6 mos old, I was talking to my close friends about what I was going through (at this point, I hadn’t even mentioned it to my husband, because I felt like if I said it out LOUD then it was sure to come true…) and they made me realize it was likely hormones and suggested I talk to my OB. I made an appt and when I broke down just telling her about it, she confirmed that it was likely hormones and stress and lack of sleep (see: twins). She said that the fact I have lived with a chronic disease for most of my life is what was triggering my fears, but that there was no physical reason for me to be worried.
She suggested I start taking an anti-anxiety medicine, on a very low dose, and said I could probably start weaning off of it around the boys’ 1st birthday.
It got worse before it got better, but once it got better, man was it better. I’m happy to say that I’m almost weaned off the meds completely, and I am in such a better place than before. Yes, I still have some fears in the back of my mind that this disease will keep me from watching my boys grow up, and I imagine those will always be there to some extent. But instead of worrying about something I cannot control, I’m choosing to enjoy what I CAN control. And that is my quality time with family and friends, and I’m choosing to live with JOY over FEAR.
Shannon was dx’d with T1D October of 1992, at the age of 17. She is a stay at home mom of 3 boys – twin 1 year olds, and a 6 year old. She wears a Medtronic insulin pump and CGM and lives a very busy life, but takes her diabetes management day by day.
The constant and unrelenting nature of diabetes management can affect one’s mental health in a number of ways, and even though we know the statistics (studies show that for people living with diabetes – type 1 or type 2 – the risk of depression doubles and the occurrence of anxiety disorders increases as well), the topic isn’t always a comfortable one to talk about. Sometimes we feel stigmatized, or wonder if any of our efforts at self-care are worth the trouble.
Today we’re publishing volume 6 of the “We Can Do This” video series which features five people with diabetes (one is also a health psychologist) sharing their personal stories of living with diabetes and managing their mental health. May is Mental Health Month, and our hope is that this discussion helps you feel less alone when it comes to balancing diabetes management and the cognitive burden that can come along with it. If you feel that professional help would be beneficial but aren’t sure where to start, an endocrinologist or healthcare provider can refer you to a psychologist that specializes in health.
Meet Mark, Gabriella, Bob, Jacquie, and Martin:
We are also proud to be sharing, in the coming days, some personal accounts of how diabetes impacts mental health through guest posts. If you’d like to submit a post that shares your own story of how living with diabetes affects your mental health, please let us know. Your story could be the one that makes all the difference to someone else who is feeling alone.
May is Celiac Disease Awareness Month, and with that in mind we’d like to introduce you to a few people who live with it.
This is the fourth video in a series we call “We Can Do This“, where groups of people with diabetes come together around a common topic and share their own stories, lessons learned, and advice for others who may be in a similar situation.
For those unfamiliar, celiac disease is “an autoimmune digestive disease that damages the villi of the small intestine and interferes with absorption of nutrients from food” (source) and is triggered by the consumption of gluten – a protein found in wheat, barley, and rye. Symptoms can include abdominal bloating and pain, weight loss, vomiting, chronic diarrhea, and constipation (source), but some people experience no symptoms, which makes it difficult to diagnose. Estimates are that as many as 83% of people who have celiac are undiagnosed (source).
This adds an additional layer of requirements, restrictions, and worries for people living with both diseases. We’d like you to meet Andrea, Jewels, Wendy and Addy, Brianna, and Dana and hope that if you’re also living with T1D and celiac, you’ll find some comfort in knowing that you are not alone.
Find out more about celiac disease from the Celiac Disease Foundation and Celiac Central, and about the link between diabetes and celiac from the Celiac Support Association.
Connection: Diagnosed with type 1 diabetes at age 18
Quote: “The hardest thing for me is… people feel sorry for me because I have diabetes, and I don’t really like that because it makes me realize how sick I actually am. I feel like I can live with my diabetes, but I have a really hard time living with all of these ‘I’m so sorry for you’ comments.
Remember that you are strong. You are brave. And you’re definitely not alone.”
This is the fourth video in a series we call “We Can Do This“, where groups of people with diabetes (or in this case, their parents) come together around a common topic and share their own stories, lessons learned, and advice for others who may be in a similar situation.
Independence in any aspect of a teen’s life can be a double-edged sword for parents – while parents want their children to be capable, that same capability is the gateway to their separation and evolution into adulthood. Independence can be a scary concept as it means children are ready to try their wings. Flying on their own means that sometimes they will fall and make mistakes, but most importantly it means that they are growing up.
Throwing the demands of diabetes in the mix makes everything trickier. Diabetes requires a lot of attention and care – something all teens aren’t necessarily known for. We’ve rounded up a group of parents who are in the throes of watching their children take responsibility for their own diabetes care and asked them to share their diagnosis stories, what works in their own families when it comes to encouraging independence, and what they’d suggest for others.
We hope their reflections and advice will encourage you as you embark on your own journey of letting go. If they can do this, you can do this too.
- text by Meri and Kim
For other You Can Do This videos from parents, click here.
Contributor: Crystal Bowersox; singer-songwriter and runner-up on the ninth season of American Idol. crystalbowersox.com
Connection: Adult living with type 1 diabetes
Quote: “I’m really enjoying my life, and my health. I just wanted to make this video to let everyone know that you can achieve your dreams.”