Chronic Illness and COVID-19: Twitter Chat Recap

My Patient Rights > Chronic Illness and COVID-19: Twitter Chat Recap

Chronic Illness and COVID-19: Twitter Chat Recap

On Tuesday, June 9th, we hosted a twitter discussion on Chronic Illness and COVID-19. Here’s a transcript of the conversation:

Question 1: How have the shelter-in-place orders affected your ability to obtain the care you need?

@ChronicCarePA: “Patients w/ chronic conditions have had routine or “elective” procedures or treatments delayed despite impact on health or quality of life. Patients, especially those at higher-risk are not seeking out care when they need it in fear of #COVID19 infection from healthcare settings”

@cvhconsulting: “A1: I worry that we may see an additional public health crisis as a result of postponed well-visits and other medical problems. Telehealth is a great solution for many, but is not equitable for the most marginalized who don’t have access to the technology #mprchat”

@warriormegsie: “A1: And some insurance doesn’t cover telehealth appointments. I’ve heard that’s an issue. #MPRchat”

@cvhconsulting: “Yes! That’s the first question you should ask. The CARES Act has helped a lot in waiving some fees, but it is important to talk about coverage. I hope it’s okay that I share a blog I wrote on this topic recently: #MPRchat”

@warriormegsie: “Q1. I’m one of the millions who was laid off during this pandemic, so I lost my employer insurance. I have ACA in the interim but it doesn’t cover my specialists or where I was getting PT. #MPRchat”

@cvhconsulting: “I’m so sorry to hear that. This is one of the endless problems that need to be addressed through policy change.”

@andyblackledge: “Q1 Telemedicine has been a game changer. COVID was the catalyst this technology needed to be embraced and deployed. #MPRchat”

@SarcoidosisofLI: “A.1 #MPRchat it has affected me because with my rare disease called Sarcoidosis it is more an in person appointment because of the inflammation. We now only have teleconference sessions. Many of my appointments have also been canceled.”


Question 2: How do you feel about the rise of telemedicine? Have you been able to receive care virtually rather than in-person appointments with your physician? 

@CAChronicCare: “Telemedicine, while not a substitute for all cases requiring in-person care, has been a great way to continue important follow-up and open discussions with the healthcare team to manage chronic conditions. Telemedicine provides patiens with more affordable, accessible healthcare”

@CAChronicCare: “I received virtual care through a telemedicine call with my doctor and PT. Worked well!”

@cvhconsulting: “Yes! I have been able to receive some care via telemedicine. It’s great for those who are comfortable and have access. There are concerns about those who speak English as a second language, don’t have access to technology, or already fear the medical system. #mprchat”

@warriormegsie: “A2: I haven’t utilized it yet. I do have friends who will have an issue but will have to be seen in-person so the doctor can physically see or touch the area. #MPRchat”

@SarcoidosisofLI: “@A2. #MPRchat I like the concept of telemedicine, but it is different to diagnose an inflammatory disease when the doctor can’t see all the inflammation. All of my appointments have been teleconference. In NY they have only been doing telemedicine.”


Question 3: Have your doctors given any special recommendations for staying safe with a chronic illness? 

@CAChronicCare: “People with chronic conditions should be extra cautious and practice prevention by social distancing, washing hands, and working with their healthcare team to keep their conditions well-managed. If you start to feel sick, call your doctor right away!”

@warriormegsie: “A3: Mine has said to maintain social distancing and gave me links to proper exercises I can do to help with my pain and keep moving. Also, make sure to get some fresh air. #MPRchat”

@SarcoidosisofLI: “A3. #MPRchat Since I was diagnosed with COVID-19, I was told by multiple doctors that going to the hospital would be a “death sentence” for me. I stayed home even when my breathing was truly bad. I was quarantined even from my family for over 6 weeks.”


Question 4: How have you been managing your health during the pandemic? Do you have any tips for others? 

@cvhconsulting: “A4: Taking long walks, managing my expectations around work and productivity (not being hard on myself), cuddling with my dogs! #MPRchat”

@warriormegsie: “I cuddle with my cat Nathan!!! Pets are fantastic! #MPRchat”

@myhealthrights: “We love that! Setting expectations & boundaries is so important and pets make everything better!”

@warriormegsie: “I keep track of flare ups in a notebook Sleep is difficult due to stress and being home the bulk of the time. I still try to keep a routine as best I can. I listen to my body and remind myself that resting is NOT being lazy. #MPRchat”

@myhealthrights: “Routine is definitely important! We’re glad to hear you’re listening to your body and prioritizing your health!!”

@warriormegsie: “Thank you! I enjoyed this chat! #MPRchat”

@SarcoidosisofLI: “A4. #MPRchat I have taken total control of my health since the starting of the pandemic. I make sure with my blood pressure machine that it remains in check. I also know my body better than anyone. I would tell people use a diary to write the good and bad down everyday”

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