For example, multiple Psoriatic-Arthritis.com participants have said they prefer first identifying their condition as an autoimmune disease before mentioning the word “arthritis.” One person said this ensures “people actually listen” while another said doing so “allows for a far greater conversation.”

Frustration 2: Conditions with Low General Awareness

People living with rare conditions or conditions with lower public awareness often deal with another layer of frustration when explaining and communicating about their conditions. For example, nearly two-thirds of Ankylosing Spondylitis/Axial Spondyloarthritis In America 2020 respondents said they felt frustrated that more people don’t know what their condition is.

It can be even more difficult to give a synopsis of a condition – let alone the complexities of various symptoms and quality of life impacts –  to people who have little to no frame of reference. And this is magnified when discussing conditions with names – like myasthenia gravis, ankylosing spondylitis or hidradenitis suppurativa – that offer few easy-to-grasp context clues.

One Myasthenia-Gravis.com patient advocate discusses telling people about myasthenia gravis and often needing “to repeat the name multiple times, explaining what this foreign diagnosis meant. To simplify it, I would often explain it as an autoimmune condition causing muscle weakness.”

One Blood-Cancer.com patient advocate has also faced similar hurdles when explaining that she has a rare type of blood cancer called myelodysplastic syndromes (MDS). “Just my luck to get something no one understands!,” she said. “‘You have WHAT? MDS? Don’t you mean MS?’ people have said to me.”

Frustration 3: Others Trying to Relate

It’s human nature to try to process new information through the lens of one’s own experiences and knowledge. Often when people try to relate to a person with a chronic condition, it is because they are trying to understand, show sympathy or engage in conversation. However, many people throughout Health Union’s communities have expressed frustrations with the tendency of others to simply relate without truly listening or trying to understand.

For example, 41% of Chronic Dry Eye In America 2021 respondents said that, when telling others about their chronic dry eye, people have replied that they also have dry eye and suggest using Visine. More than a third of respondents have been told by others that their condition is just the result of allergies.

One AnkylosingSpondylitis.net patient advocate notes that it’s “frustrating when people compare regular back pain to ours, because regular back pain can be fixed while [ankylosing spondylitis] is a permanent condition.” She said she understands the “human instinct” to relate one’s own experiences to others, but asserts that situations when people are trying to explain the impact of their chronic conditions “isn’t the time for that.”

Many people with psoriasis have lamented that people often think their condition is just a rash, with one PlaquePsoriasis.com participant saying, “I have had to tell people that they can’t ‘catch’ my skin condition.” Another patient advocate, this one from IrritableBowelSyndrome.net, expressed regret about mentioning dairy as one of her IBS trigger foods, “as people associate them with dairy intolerance far too quickly.”

Frustration 4: The Burden of Constantly Explaining and Answering Questions

Another major source of frustration comes from the burden people often feel when explaining or constantly answering questions about their condition. For some people, it’s just not worth the effort and can have a negative impact on their emotional and mental health.

Specifically, 44% of Migraine In America 2020 respondents said they have given up trying to explain migraine to people who don’t have it. And 58% of Lupus In America 2021 respondents said they feel like they always have to explain their condition to people who don’t understand. A number of these respondents said they no longer attempt to explain their condition, with common reasons being nobody tries to understand and they just don’t have the energy.

One common refrain from across the communities is the volume of questions received and the fatigue from constantly answering the same questions. One PlaquePsoriasis.com patient advocate discussed how “having to explain your condition over and over to random strangers” can “wear you down” and “damage your self-confidence.” A separate PlaquePsoriasis.com advocate said she sometimes hates having to constantly explain her condition because “the words have started to sound so mundane to me” and she occasionally questions “if people really even care or if they are just being intrusive.”

Resources and Meeting the Needs of the Explainers

Across Health Union’s communities, many patient advocates espouse the importance of being patient with people as they explain their conditions and to learn from each experience. For people living with conditions with lower levels of public awareness and understanding, there is a significant appetite for resources and content to help them better explain their conditions. This is the case for:

• 40% of Myasthenia Gravis In America 2021 respondents
• 40% of Hidradenitis Suppurativa In America 2020 respondents
• 39% of Chronic Dry Eye In America 2021 respondents

It is also noteworthy that the desire for content and resources to better explain one’s patient journey is not limited to less-discussed conditions. For example, 21% of Type 2 Diabetes In America 2020 respondents expressed interest in seeking out content to help themselves better understand or explain diabetes.

When considering the type of resources to consider providing, it might be helpful for healthcare marketers to understand some of the takeaways patients have gathered for themselves when communicating with others. According to one Heart-Failure.net patient advocate, keeping it simple is key. “You may feel inclined to share your new-found knowledge, which is great, but in the beginning, keep it basic and build a foundation,” he said. “You have plenty of time to impress and teach…the fine details and medical terminology you have learned.”

Another advocate, from InflammatoryBowelDisease.net, mentions fighting “the need to over-explain.” She says that when explaining her condition to a new person, it’s important to remember “this person is human (too), this is all very new to them” and that there shouldn’t be pressure “to explain every fact about your disease in one conversation.”

Validation is also key. One AxialSpondyloarthritis.net patient advocate said that, instead of sympathy or having somebody relate to what she’s going through, she prefers people “meet me where I’m at, validate that it sucks, and treat me like a person going through something rather than a weakling or someone who needs to be coddled.”

Engagement on Health Union’s growing portfolio of online health communities combined with large scale, patient-reported data from its syndicated In America surveys can offer unique insight and understanding into nuances of the patient journey experienced by different groups of patients. Learn more about Health Union’s custom media, marketing research and clinical services that can help you create smarter, more effective solutions for patients and caregivers.