Understanding Rare Conditions: Support & Connection

Understanding Rare Conditions: Social Health Facilitates Needed Support & Connection

Published November 9th, 2022 | 5 Minute Read

As the leader in social health, Health Union’s growing portfolio of online health communities addressing conditions considered rare diseases – defined by the United States as a condition that affects less than 200,000 people nationally – helps people who are navigating rare diseases by providing support, connection, and information to help them navigate their health journeys.

In addition to providing a more relevant, supportive experience for people living with these conditions, Health Union’s rare condition communities – such as Sickle-Cell.com, SpinalMuscularAtrophy.net, Cystic-Fibrosis.com and the recently launched RareDisease.net – provide a unique opportunity for the healthcare industry to truly understand the unique health journeys both within these individual conditions and the rare condition community in general.

This article, the second in a series seeking to better understand the rare condition health journey, focuses on the challenges of finding necessary support and connection and the role that social health plays in making people feel validated and less alone. The first article focuses on the challenges around finding reliable information, and the third focuses on the multifaceted financial impact.

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Among various challenges, living with a rare condition can be quite lonely. In addition to often never hearing about their rare conditions until their diagnosis journey, it is common for these individuals to not know anybody else living with these conditions.

This can have a significant impact on a person’s ability to feel informed and supported about their condition, validated in their concerns and experiences and empowered to make the best decisions for their health.

Observations from patient leaders within Health Union’s online health communities reveal that, despite often having a deep bench of family and friends who support them, people with rare conditions often lack the condition-specific support and connection they need. These perspectives, along with findings from Health Union’s In America surveys around various rare conditions, show how online health communities and other social health resources provide people with unique opportunities for support and connection they might otherwise lack.

Overcoming Loneliness and Seeking Validation & Support

For some living with a rare condition, experiencing loneliness and a lack of support can begin with the diagnosis process. One Neuromyelitis-Optica.net patient leader had this experience, saying “Like many, I felt very alone when I received my NMO diagnosis,” largely because it was “a disease that I had never heard of.” And when one Myasthenia-Gravis.com patient leader was diagnosed and read that “14 to 20 per 100,000 population are diagnosed with MG,” she said “the isolated sensation hit like a brick” and “knowing I was one of so few was crushing.”

Depending on the individual, the condition and a number of other factors, including age and location, some people with rare conditions have spent significant portions of their lives without ever meeting another person with the same condition. One Sickle-Cell.com patient leader, who hadn’t met anybody else with her condition throughout her childhood, said “It wasn’t until middle school anyone had even told me there were other patients with sickle cell in the hospital too.”

Although many people with rare conditions have strong support systems of family and friends who care about them and healthcare practitioners who provide them with clinical care, there is often something missing. As one ThyroidEyeDisease.net patient leader puts it, “You can have a million people around you saying they are here for you, but unless you can relate to someone, sometimes it really does feel lonely.”

Another thyroid eye disease patient leader explained, “It was nice that my friends and family wanted to listen, but they really didn’t get it.” Yet another implored, “I needed to commiserate with others going through this awful stuff.”

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People with cystic fibrosis experience an extra dimension to this challenge. In addition to the condition being rare, people with cystic fibrosis are not allowed to be within six feet of each other due to concerns about cross-infection of dangerous germs and bacteria. Even if two people with the condition know each other, connecting in-person is exceedingly difficult.

“I never knew anyone who understood my battles on a personal level,” one Cystic-Fibrosis.com patient leader said. “Until the internet became a place to meet others like me.”

‘As If We All Joined Forces’: Social Health Resources Facilitate Connection, Support

Over the past few decades, the internet has allowed people living with chronic and complex health conditions to find information, connection and support that might not have been readily available. For people with rare conditions, social health – specifically the evolution of social media, virtual support groups and online health communities – has been a true game changer.

For some with rare conditions, connecting with others online with shared experiences has mitigated feelings of loneliness. One Neuromyelitis-Optica.net patient leader said that, by making connections online, she has “been able to make new friends and become more social”; she continues that “even in my darkest times, I find that I am not alone with how I am feeling.” A ThyroidEyeDisease.net patient leader said that talking to other TED patients online and reading about their experiences “truly has made me feel less alone, and I hope it makes others feel less alone too.”

Being able to connect online with people who share their conditions and, as a result, building meaningful relationships has expanded emotional support systems for people with rare diseases. In some cases, patients might find this source of support just as, if not more, helpful than the support they receive from family and friends. For example:

43% of Spinal Muscular Atrophy In America 2022 survey respondents said they get more emotional support online than in person
While 39% of Sleep Disorders In America 2021 respondents living with narcolepsy ranked family as their top source of emotional support (39%), it was followed closely behind by social media (37%) and online support groups (34%)

Social media specifically has helped facilitate connection and support among people with rare conditions. One HSDisease.com patient leader said that connecting with online patient support groups and building her own community on social media has “filled a gap I didn’t know I needed.” She realized she “needed a community of people to whom I didn’t have to explain what I was going through, too. They just inherently understood, and that to me was peace.”

When a ThyroidEyeDisease.net patient leader first began posting on social media about her condition, she was shocked by the “outpouring of comments and messages from people dealing with the exact same thing as me,” and the support and advice that followed. “It was as if we all joined forces,” she said, “and it was a great feeling.”

One Sleep-Disorders.net patient leader with narcolepsy was particularly drawn to Instagram. “There were so many amazing humans who were sharing their stories online,” she said, “and I started to see that I wasn’t alone in my struggle.” Another narcolepsy patient leader, who has joined or followed several support groups on Facebook, Instagram and Twitter, said they helped her “realize how little in-person support I truly have.”

Online Health Communities Represent ‘An Entire World Where I Actually Belonged’

Whether they cater to specific conditions or rare diseases generally, online health communities can be impactful in providing support and connection. In fact, in an analysis of conversations from within its online health communities, published by the Journal of Medical Internet Research, Health Union found that 58% of analyzed comments represented expressions of social support for others, demonstrated through information-sharing, expressions of empathy and encouragement to others.

One Myasthenia-Gravis.com patient leader said that participating in an online health community “can be a real remedy for loneliness when a person is struggling with a condition that affects perhaps 1 in 10,000.” Findings from Health Union’s In America surveys of rare condition communities support this; for example:

59% of NMOSD In America 2022 survey respondents said being part of an online health community helps them feel less alone
35% of Hidradenitis Suppurativa In America 2021 respondents said online communities help them feel less lonely

Various patient leaders’ comments highlight what makes for an online health community optimized for support and connection. One ThyroidEyeDisease.net patient leader called out the importance of having a “safe space where you feel comfortable talking and asking questions about anything and everything you are going through.” And another patient leader espouses the importance of finding a community, like Myasthenia-Gravis.com, that is “carefully moderated, with a team that meets frequently and has a panel of experts to check out tricky questions.”

One narcolepsy patient leader sums up the overall benefit of participating in a community like Sleep-Disorders.net, saying she felt as if she “had discovered an entire world where I actually belonged.”

Better understanding the health journeys of people living with rare conditions, specifically the challenges they face finding the connection and support they need, will provide the healthcare industry with what they need to provide necessary resources. Social health creates space for patients to discuss their unique challenges, allowing the healthcare industry to better address their needs.

Partner with Health Union to better understand these insights and to expertly navigate the expansive world of social health – including scalable, socially driven online health communities, like the newly launched RareDisease.net – and comprehensive, quantitative, condition-specific data.

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