We recently had the opportunity to meet with Scott K. Johnson (over the computer, 5,000 miles away) to discuss diabetes and its effect on mental health. Scott has type 1 diabetes and shares his experience by writing, speaking, and blogging, as well as being a patient advocate. He is also a Patient Success Manager at mySugr USA. He has reached millions through his diabetes blog and helped build a thriving online diabetes community.
We would like to thank Scott again for taking time out of his busy schedule to speak to us about diabetes and give us a better understanding of what day-to day life is like living with diabetes.
Can you start by telling us a bit about yourself and your diabetes experience?
I was diagnosed at 5 years old with type 1 diabetes, back in 1980. I’m doing well and living a full and rich life. I’m married with children and I have a grandchild. I work in the diabetes industry. In the early 1980s we didn’t have all the tools and technology we have today, so management was in some ways harder, but in some ways easier. Now adays we are almost bombarded with information – I can see my blood sugar at any time of the day and night, I have alarms and get notifications if it’s going above or below my target range, which allows me to make adjustments more frequently, but means I have to pay more attention to my diabetes. This helps me become more aware of what affects my diabetes, so has helped me learn how to make adjustments to keep my blood sugar levels on target more often. However, sometimes I am interrupted often by alerts, I’ll be in a meeting or in the middle of working on something, and I’ll have to stop what I’m doing to make an adjustment and that can be really frustrating.
How often do you think about diabetes daily?
How often I think about my diabetes can change depending on what’s happening. When things are going smoothly, I think about it before every meal or snack, and a little while after every meal or snack so at least 6 times a day. But then there’s also the random times when you’re feeling a little tired or a little bit off and you wonder ‘is it my diabetes?’ and then you’ll look at your blood sugar. It can impact what activities I do within a day, so if I want to go for a walk I have to question ‘is my blood sugar ok for going for a walk?’, And I must think about what I’ve done over the past few hours and when I’ve taken insulin, and have I eaten recently, and do I need to bring something with me? There’s been times when I’ve had to not do activities or had to change the time I want to do stuff because of my diabetes, so spontaneous exercise is really difficult. You really do always need to plan ahead, which can be very frustrating. You can’t depend on when your motivation tells you to work out – you might feel motivated to do something but by the time you’ve finished all your planning, your motivation is much lower, and you might not feel like it any more.
What frustrations do you have with your current insulin routine? How often do you inject?
I wear an insulin pump, rather than injecting. Someone without a pump usually has to take long lasting insulin: a basal insulin, and a rapid acting insulin: a bolus insulin, for balancing food or correcting highs. A pump allows you to only use one type of insulin (rapid acting) and delivers a steady drip of insulin over the course of the day. If my blood sugar gets too high, I can press some buttons to get more insulin. My continuous glucose monitor and pump are two different things. I see my glucose info on my phone or apple watch, so I see it quickly and easily.
With this system do you worry about hypos and adverse effects?
Yes, I think it’s something that everyone who is using insulin worries about. Insulin is a very powerful hormone. There’s a lot of things within diabetes that we don’t understand and can’t control. There are times when we experience low blood sugar and may not know why. Every time I eat something, I need to estimate how many carbohydrates are in there, and then I need to enter this amount into my pump. The pump then uses that information to calculate the amount of insulin needed. If my estimation of the carbohydrates is off, then the insulin measurement will be off. So then later, maybe 1-2 hours or more, my blood sugar will be too high or too low. But other things like activity affect how well insulin works for you. So, activity can supercharge your insulin – almost like a secret weapon within diabetes, but if you’re not expecting that, it can lead to low blood sugars that you’re not prepared for. It takes a lot of energy, a lot of practice, and a lot of trial and error to work out the balance of insulin, eating, and exercising. I tend to eat many of the same things where I have figured out how many carbohydrates are in this certain food item. I stick with what I know. Many people eat a lot of the same things, so you get to know your favourite food items. If I were an adventurous eater and enjoyed taking risks with my food, I think it would feel much more frustrating.
Do you think mental health support is good enough for people with diabetes?
No, I don’t think it’s good enough. There’s lots of work to be done around awareness of mental health in diabetes, as well as stigma. People are afraid to admit that they need help with their mental health and are not sure how to navigate seeking that help, and what the financial ramifications are. In the US, mental health care is categorised differently to regular doctor visits, so insurance may cover it differently. It can be complicated to figure all that out. Also, finding mental health therapists or psychiatrists that know enough about diabetes is hard.
You do a lot of work for the diabetes community. Can you tell me about discussions you’ve had with people with type 2 diabetes and what problems they face?
I think the world of type 2 diabetes is very misunderstood, even I feel like I don’t understand that world very well. People with type 2 diabetes experience a lot of stigma, and there is a lot of guilt and shame, because the world, I think, perceives type 2 as something they’ve done to themselves – they’ve eaten their way to type 2 diabetes. It’s more complicated than that – if it was as simple as weight or diet, then anyone over the threshold weight would have type 2 diabetes. It’s not very well understood yet. Because of this stigma, there’s far fewer people in the social media space that talk about type 2 diabetes, which makes it harder to understand that world. With type 1 you have very rich conversations, and I would like to see similar conversations take place in the type 2 space. If there is anything that can be done to make people with type 2 diabetes feel safer when talking about it, without receiving judgement or rude comments, that would be amazing.
Tell us more about your blogging and why you decided to share your experience with diabetes?
I was struggling with my mental health around diabetes, and I needed a place to sort out my thoughts and my feelings. Writing felt like a great place to do that. There was something about writing, the exercise of taking the thoughts and feelings that were in my head and heart and turning them into coherent sentences and paragraphs, that was a great healing and coping mechanism for me. It also helped me connect with other people with diabetes. The connections I started to form helped me feel a sense of normalcy around my diabetes and helped me see that things I was struggling with in my own diabetes were not reflections of being broken or worse at diabetes than anyone else, they are normal parts of it. These connections also allowed me to see different perspectives of approaching problems, which I found to be very powerful as well.
You’ve spoken about diabetes fatigue on your blog, can you talk to us about it and how you cope with it?
I think that it’s important for me to recognise that diabetes fatigue is a very normal part of living with diabetes. It takes a lot of work to live well with diabetes, and with everything that takes work, there is fatigue. Rather than ignoring that fatigue, it is important to recognise its presence and give myself some space and room to feel tired from time to time. It’s important to take the time to balance other areas of my life to maintain my self-care, like getting enough sleep, or working with my family to get support with other areas of life that are stressful or demanding. Diabetes fatigue is going to be there, and eb and flow with how I’m feeling about my diabetes. There may be things happening that cause it to rise up stronger than before. For example, there will be periods of time when even though I’m trying my best, my blood sugar won’t cooperate, which will make me feel more fatigued than normal, but it’s important to remember that that’s ok and it’s not always my fault when this type of thing happens.
Have other people with diabetes you’ve spoken to talked about diabetes fatigue, including those with type 2 diabetes?
I think it’s a community wide thing, I know type 1 people that do, but I’ve not heard about it as much from those with type 2 diabetes. But I do think they experience it, maybe even more so. One of the big differences between type 1 and type 2, is that because people with type 1 diabetes have insulin, it can be easier for us to bring our blood sugar down. But for those with type 2 diabetes who don’t take insulin, they might have to go for a long walk or something to bring their blood sugar down. In many ways the fatigue level might be more so in type 2 because they are trying to solve more problems and don’t have as many tools available to help them.
To visit Scott’s blog click the link below:
And find him on Twitter here: