What People With Chronic Illnesses Really Think About Telehealth

Telemedicine continues to expand its reach with doctors and practitioners offering online and virtual appointments. But there is a certain population of individuals where the impact is more significant. Learn how the growing trend of telehealth impacts the chronic illness community.

The Growing Trend of Telehealth

In March 2020, a survey from Sykes Enterprises found that out of 2,000 adults living in the United States, nearly 60% said they were more likely to consider using telehealth services. This information is a positive trend for the population at large, but what does the growing trend in telehealth services mean to the chronic illness community?

While this is certainly not a comprehensive survey, I did reach out to 18 members in my chronic illness community to get their thoughts on telehealth before the pandemic, and going forward. The majority of the respondents live in the US, with several from the UK and one each from Canada and Singapore.

The conditions include but are not limited to:

• Chronic Fatigue Syndrome (ME/CFS)
• Chronic Pain
• Fibromyalgia
• Lupus
• Mental Health Conditions (anxiety, bipolar, PTSD, etc)
• Migraines
• Multiple Sclerosis
• Myasthenia Gravis
• Psoriatic and Rheumatoid Arthritis
• Sjogren’s.

Is Telehealth Accessible for You?

Not surprisingly, 47% of the respondents used telehealth before, with a variety of practitioners. Sixty-three percent said their insurance covers telehealth, while 18% said it did not, and 18% were not sure.

With telehealth becoming more accessible, 65% said they will use it more often, compared to 35% who said they will use it the same or less.

Interestingly, 75% have seen their General Practitioner (GP, Primary Care Physician, General Doctor) in person, along with 70% online. These numbers obviously overlap. But it’s a great trend to see the almost equal accessibility of the front line physician. Many states and insurance companies require a physical first visit before moving online.

While the in-person doctors range from GP to specialists and everything in between, the type of telehealth doctors include GP, specialists, nurses, and therapists.

What Are the Benefits of Telehealth?

There is the obvious benefit of convenience. Thank you, Captain Obvious.

Many individuals with chronic conditions are unable to drive themselves due to fatigue, pain, migraines, vertigo, mobility challenges, and other significant symptoms. Other individuals with chronic illness work a full-time job and find it time-consuming to take sick leave to see numerous doctors and specialists for their conditions.

A whopping 75% said they received the same or better care with telehealth (divided equally) and 25% felt that their in-person visit was better. The benefits are certainly numerous, and my survey respondents offered their opinions on why they participate in telehealth appointments.

Britt Clark, Lupus Patient Advocate at Lupus Lyfe has to drive over an hour and a half to see her Rheumatologist in person. She finds that online appointments are more thorough and efficient. Rachael Tomlison, MS Patient Leader with Accessible Rach enjoys not having to fight for a parking space or dealing with the extra stress of going to the hospital for her appointments.

Claire, a Fibro Advocate with Through the Fibro Fog finds telehealth useful for patients who find it difficult to travel to their appointments due to pain and fatigue. Mary Pettigrew, a Patient Advocate with MS Pals loves the convenience of her telehealth appointments and finds that her doctors are more focused on her as a patient.

For me personally, I’ve only had a few online appointments with a specialist and would love to see more of my doctors embrace this option.

What are the Limitations and Concerns of Using Telehealth?

While the benefits are many, there are also plenty of limitations when it comes to an online appointment.

Security and confidentiality were some of the concerns. Fifty-eight percent of the respondents felt that their doctors offer a secure experience, while 12% said they did not feel it was secure, and 30% weren’t sure.

Julie Holiday, the ME/CFS Self Help Guru worries about sitting in the waiting room of a doctor’s office and being exposed to a virus or cold that will make her condition worse. Sheryl of A Chronic Voice expressed concerns that telehealth appointments won’t be as thorough and doctors won’t be able to fully check and understand symptoms which may lead to inaccurate diagnoses.

Other chronic illness advocates agree in-person appointments are necessary for certain conditions. Morgan Greene, blogger at Is Was Will Be commented that despite her concerns about video quality to share rashes or swelling, she found that her doctors spend more time with her during virtual appointments. Lawrence “rick” Phillips Ed.D., author of RADiabetes agrees that while virtual appointments are convenient, the lack of touch and inability to access swelling was of utmost importance to his treatment. Diane Talbert, Founder and Patient Advocate of Power Beyond Psoriasis shared that for patients with psoriasis, a face-to-face physical assessment is necessary. Imagine… feeling empowered with your health and finding and collaborating with the doctor who is right for you!

The Future of Telehealth for Chronic Illness

Telemedicine services have been around for a long time. The growing trend of telehealth is certainly beneficial for the chronic illness community, even if it does have its limitations. In any case, it’s important that you communicate with your practitioner and be always come prepared for your appointment, whether in-person or online.