In these surreal times of dealing with a global pandemic, people with diabetes are facing heightened uncertainty and anxiety — from concerns about contracting the coronavirus, to worries about accessing essential supplies, to what kind of diabetes care they might expect if hospitalized… it’s a lot.
Here are some stories from around the diabetes community, about how people are coping with some of these issues.
For Justin Wilhite in the San Francisco Bay Area, the fact that he’s been living with type 1 diabetes for more than a decade was reason enough to be concerned about potential exposure to COVID-19.
A stay-at-home dad, the 39-year-old in Oakland, California, decided to self-isolate as much as possible in early March, when he first noted that “something was off.” There were times when he’d give himself insulin, but it was as if he hadn’t dosed anything. His blood sugars continued to run high, not dented at all by any of the Humalog (rapid-acting) or Lantus (long-acting) insulin he had taken.
“It was baffling because I felt perfectly fine,” he recalls now, about those early days at the start of March. “It started making me doubt my sanity. I would swing wildly but would mostly be high during the day and crash about 1 to 2 a.m. Very out of the norm for me.”
Then, the symptoms started. Though mild at first, he describes a “weird headache” mimicking a migraine and later that same day he could feel his lungs were tight.
Because he lives with the “underlying health condition” of type 1 diabetes, Wilhite says his medical care team was concerned about his body’s ability to fight off the virus. But since his vital signs were great, they were fairly confident he could keep fighting off the illness without anything scary happening.
A week later, he went to the ER after nearing passing out for no reason. It hurt to breathe, Wilhite recalls. The hospital determined it was the flu, gave him meds and sent him home. But he returned within days, as the chest pain worsened, it got tougher to breathe, and walking to the bathroom was like a marathon.
He was diagnosed with COVID-19 on March 16, mostly through a process of elimination that his medical team used in determining it wasn’t another type of flu or other illness. They consulted with CDC and infectious disease experts at the hospital, and since Wilhite wasn’t “dying or dire” they determined an actual COVID-19 test wasn’t necessary.
Like so many who have fallen ill, Wilhite says he doesn’t know how he was initially exposed, because he hadn’t traveled or been around anyone known to have been exposed.
After being sent home from the clinic and dealing with some severe flu-like symptoms and breathing difficulties brought on by this respiratory virus, Wilhite says he’s now doing much better and believes he is on the mend.
He is also grateful his family hasn’t been hit hard by this. Both his 9-year-old and 17-year-old kids had a day-and-a-half cold while in isolation, but that passed and they’re doing OK now while remaining isolated at home.
More than anything, Wilhite wants the Diabetes Community (and the rest of society) to not panic. Take the necessary precautions, take it all seriously, and if exposed and affected health-wise, do what’s needed to stay isolated and manage one’s health safely, he says.
“While not out of the woods yet, I feel like a human today,” Wilhite told DiabetesMine on March 23. “There’s anecdotes of people with COVID-19 having the ‘three roller coaster’ of good-bad, good-bad, good-bad before you’re on the road to recovery, symptom-free. The insidious thing with this virus is you can be almost a month infected before symptoms show up, while being contagious — nearly 30 days with virus symptoms, and 30 days contagious WITHOUT symptoms. Totally crazy!”
More of these real-life stories of PWDs (people with diabetes) exposed to the coronavirus are popping up online, including this Diary of a Dad by 52-year-old Andrew O’Dwyer, who believes he contracted COVID-19 while traveling in Italy. He chronicled his experience March 1 to 13, from feeling nothing but worry to experiencing pretty severe respiratory symptoms, to working his way back to health.
O’Dwyer’s message to people who think they may have COVID-19 and are self-isolating: “You need your friends to help you get through this. I’ve been lucky because my neighbours and friends have fetched groceries and my medication for me. I would have been snookered without that.”
And his final word mirrors Wilhite’s sentiments: “Don’t panic. It’s not a pleasant illness but it’s not the end of the world if you do get it. In most cases it’s a flu-like illness that’s quite debilitating for a while that you will recover from. It’s annoying and it takes a bit of time to get better, but for the majority of people it passes.”
While that’s reassuring, those with “essential” jobs requiring them to still show up at work have an additional set of worries.
A newly created group on Facebook is working to connect healthcare workers, emergency personnel, and first responders who live with type 1 diabetes themselves and are in the trenches dealing with this pandemic. As of this week, there are more than three dozen members, discussing their personal struggles and techniques they are using for keeping safe in the workplace.
A founding member is Jolynn O’Shaughnessy from western Wisconsin, who works as a registered nurse in a neurosurgery/neurosciences unit specializing in traumatic brain injuries, strokes, and surgeries. Her hospital is designated as a COVID-19 unit, so they get all those patients when they start arriving at the hospital.
“Personally, I’m terrified,” she shared online. “I’ve been feeling off the last couple of days with my blood sugar much higher and I’m just exhausted. I’m praying it’s just another cold, which would be my fourth one this season. I’m just glad I’m not the only one in the situation.”
All of us share the mental health burdens of all this, from being sheltered at home and possibly even locked into self-isolation, to the continuous stream of alarming news updates we’re being saturated with.
North of Houston, Texas, Kathy Tipton says the anxiety is what’s hitting her life with diabetes the hardest. Living in hurricane country, she says she is always stocked up and refills her prescriptions early. This time, she was able to top off her diabetes supplies and medications at the end of February, so she counts herself lucky on that front.
When the Centers for Disease Control and Prevention (CDC) and American Diabetes Association (ADA) changed the guidance in early March on what PWDs should do in light of this pandemic, her endo suggested she try to work from home. She works in the corporate health department of a major oil company, so her group has stayed pretty busy during this time. Her boss OK’d remote working, but she says she felt like it was an overreaction at the time, even with a letter from her doctor. Then, as the COVID-19 news got more and more serious, she started to worry.
“It’s the ‘what if’ thoughts in my mind… I think we longtime T1Ds definitely feel an overlay of anxiety during any bad flu season, so COVID-19 is like that on steroids. I am a little nervous at the thought of getting sick myself, but I’m deeply worried about my family,” she shares.
With her husband coughing, feeling tired, and having a sore chest recently, Tipton says she felt even more on edge. Knowing that he’s been doing the supply runs to keep her from being exposed adds even more stress.
“So layer guilt on top of worry, and it’s not good for my stress levels,” she says. “What kills me is seeing how stricken he looks whenever he reads about how PWD are affected by this thing.”
To help better manage her diabetes during this time, Tipton says she’s deliberately started eating lunch away from her desk each day and taking 15-minute breaks in the morning and afternoon to stretch or walk on their treadmill. That’s helped on the diabetes management side, but also for her mental health.
Worry about access to diabetes meds and supplies is hitting many in the Diabetes Community hard. While some insurers have relaxed rules to make it easier to pre-fill prescription refills, not all have made crisis-mode policy changes.
Here are some testimonies we’ve collected from around the online diabetes community:
“Getting extra insulin was a challenge. Currently on Medicaid due to unemployment and they are very strict with 1 vial every 20 days. Even though my endo wrote for more and we appealed. On private insurance I always had a stockpile but I went through that once I got on state insurance. Only had 1 vial in the house at a time. Endo’s office (hour away) had no samples. Finally borrowed money to purchase three vials (out of pocket). That was super stressful. (Did not wait till last minute. Started trying to get extra supplies 2-3 weeks ago).”
“Didn’t get to see my doctor because they rescheduled me. My sugar levels have been out of control and I’d needed to see him and was waiting for my appointment. So much for that.”
“Going to work because my choice was a furlough with paid insurance until they decide to stop paying it and then basically be unemployed, or go to work and keep my insurance. We all know as a type 1… who can afford what we need to stay alive without insurance??? Ugh. Catch 22.”
“Staying at home as our school district is closed. (I’m a bus driver) doing projects around the house, sleeping in, exercising more (that way I can lower my insulin use). Hope all my fellow PWD are hanging in there, self-isolating or practicing safe social distancing. We will get through this. Stay safe and stay positive.”
“Since I’m retired nothing too different just making sure I have enough insulin.”
“I have some serious complications from my diabetes. I feel like this virus is going to kill me.”
“Everything is good. Sent my care provider an email requesting refills on my meds. Nurse responded in 24 hours with callback. They sent in the scripts and I am all set with my meds. I am recovering from surgery late January. Glucose levels are all over the place. Nurse gave me some instructions on what to do. I heart my endo team.”
“Starting to worry about getting insulin for my child.”
“Praying more, trying to avoid news, eating the same healthy food, that way the glucose stays on point.”
“I’m on Day 4 of working from home. Adjusting has been more challenging than I imagined but, somehow or other, my blood sugars have been more stable than usual… so I guess WFH agrees with T1!”
“We’re still paying down our deductible so the bill for my early refill on test strips triggered hiccups, but I had no trouble putting it through. Compared to the wildfires the last 3 years in Northern CA, this shelter-in-place has been easy so far.”
Here are a few specific resources that might help:
- A diabetes self-love online coaching program to nurture mental health, from Diabetes Dominator Coaching
- 9 resources for coping with coronavirus anxiety, from Healthline
- How to master a telehealth doctor’s appointment, from Dr. Steven Edelman of TCOYD
- This 10-minute at-home bodyweight workout, by diabetes coach and author Ginger Vieira
- Diabetes food advice for hunkering down during COVID-19, from diaTribe
- Best technology and tools for working from home (WFH), from Tidepool
- How to get unemployment benefits if you’re out of work at this time, from BlockClubChicago