Health journeys can be complex, sometimes more complex than a Rube Goldberg machine or spelling, say, embourgeoisement or consanguineous. And certain aspects of living with a chronic health condition – be that a symptom, side effect, emotional experience or other quality of life impact – can be hard to put into words.
Over time, especially in this digitally connected world, patient communities co-opt terms unique to certain aspects of the patient experience unique to their condition. These terms are meaningful and tend to take hold – and be put into a clear context – across Health Union’s growing portfolio of online health communities and among its patient leaders.
Findings from Health Union’s large-scale, condition-specific In America surveys – conducted regularly – as well as perspectives from people engaging with these communities, show just how pervasive these terms have become.
Leveraging these findings and perspectives from patient advocates, we are spotlighting five (of many) unique terms often used by people living with chronic conditions. A few of these terms are specific to one condition, while some have been co-opted by people across various conditions.
The real-world application of these terms offers significant insight into what people experience at different points in their journey. As a result, it is important for healthcare companies and healthcare professionals to be aware of these terms and be able to “speak the language” as they communicate with patients and develop solutions to address unmet needs.
Follow-up scans become a way of life for people living with various types of cancer. With those scans come results, such as a recurrence or spread, that could potentially alter a person’s health journey. The type of anxiety felt around the scan process is so distinct and often life-impacting that many people with cancer have co-opted the term “scanxiety”—a portmanteau of scan and anxiety—to better reflect the anxiety, fear and worry they experience.
According to various Health Union In America surveys, scanxiety is a common concern and topic of interest among people living with cancer. For example:
- Nearly three-fourths of Lung Cancer In America 2018 respondents who said they undergo regular scans reported either “more” or “a lot more” anxiety around the time of scans than at other times
- 59% of Bladder Cancer In America 2020 respondents said they experience anxiety about a possible recurrence when they have to go for a scan or follow-up visit
- One in four Skin Cancer In America 2020 respondents said they were interested in content or resources on anxiety related to scans and biopsies
Conversations within Health Union’s cancer communities reveal that scanxiety can occur regardless of stage or, according to one LungCancer.net patient advocate, “whether you were recently diagnosed or are a longtime survivor.” For example, people with late-stage cancer may experience a great deal of anxiety when undergoing scans to determine how far their cancer has spread; so might a person who has undergone successful treatments and now needs a follow-up scan to see if the cancer has returned.
For those in remission, the time period before scans can feel like, as one Blood-Cancer.com patient advocate puts it, “a dark cloud looming.” For some who try not to let cancer define their lives, scans can serve as an unpleasant reminder of their reality, with one BladderCancer.net patient advocate estimating that “my daily thinking assigned to my cancer” increases from 3% to 20% around scan time. Another LungCancer.net advocate said she knows some people who “are so paralyzed by fear that they refuse to even leave the house for about a week.”
For many, scanxiety hits its peak in the time between the scan itself and when they find out the results. One ProstateCancer.net advocate says his anxiety is worst “about four days after the blood test when I have to call for the results.” And the longer the wait for the results, the worse the anxiety can get. For example, another LungCancer.net patient advocate once had to wait more than three weeks due to “a mix up at the cancer center.”
To this point, understanding scanxiety can provide healthcare companies with an opportunity to help alleviate the physical and mental health concerns people with cancer face due to scans. This can include initiatives to help people living with cancer cope with scanxiety and awareness campaigns to help clinicians understand the importance of delivering scan results as quickly as possible.
“Endo belly” is a term often used by people living with endometriosis to describe a type of severe bloating caused by the condition and often linked to flares or the menstrual cycle.
Endo belly is common among people living with endometriosis. In fact, 93% of Endometriosis In America 2021 respondents said they have ever experienced endo belly. For many, it’s a frequent occurrence; 84% of survey respondents said they had experienced endo belly during the previous six months.
For some with endometriosis, endo belly is viewed as diet-related bloating that they can typically manage by being hyper-vigilant about monitoring their food intake. One Endometriosis.net patient advocate, for whom endo belly was her earliest endometriosis symptom, said that her condition “is very responsive to the foods I put in my body.” As a result, “inflammatory foods will cause me pain, and often cause me to bloat.”
For others, though, feeling bloated is not quite how they’d describe the symptom. One Endometriosis.net patient advocate described her endo belly as feeling “more like a monster taking over. Pressing on every organ possible, stabbing you over and over again.”
In addition to pain and other physical implications, endo belly can cause various emotional and mental health concerns, including impacting one’s self-confidence and overall quality of life. Some of this comes from the notion of “going from a flat stomach to looking six months pregnant in a matter of seconds.”
Providing more layers to what can already be a difficult symptom to manage, the idea of “looking pregnant” can sometimes be a complex situation for a condition often linked to infertility concerns. Multiple Endometriosis.net patient advocates have written about being asked multiple times if they are pregnant. One advocate adds that this is just another reason to “not ask a woman if she is pregnant!”
Understanding the full breadth of what people living with endometriosis experience with endo belly, especially the impact on emotional and mental health, can help to refine how both healthcare companies and providers communicate around the condition.
“Painsomnia” is another fairly easy-to-understand portmanteau that encapsulates the experience of a person who has difficulty falling or staying asleep due to severe physical pain. It is often associated with health conditions in which chronic pain is a frequent symptom or side effect. As a result, painsomnia is a much-discussed topic within Health Union’s communities.
For chronic conditions like endometriosis, where pain – especially within the pelvis – is among the most common symptoms, painsomnia appears to be quite common. In fact, nearly half of Endometriosis In America 2021 respondents said they have experienced painsomnia at some point.
For some, painsomnia is a nightly occurrence. A prompt on the Facebook page for MultipleSclerosis.net asked people, “Have you ever experienced painsomnia?”; among the hundreds of responses were many people discussing their daily struggles. Some of the most colorful responses include:
- “YES. Every day for the last 2 years. It’s oppressive and miserable!”
- “Every. Damn. Night. My legs and feet hurt the most. This last year or so, I’ve started waking up with one or both of my legs numb from my hips to my toes. My hands go numb every night too.”
- “I don’t want to sound dramatic, but I experience it almost every night. Usually my legs or the heels of my feet. Or neck. Or back. Wrists. Shoulders.”
What can make this such a difficult experience for many is that, by nature of being in bed and unable to sleep, there isn’t much to distract from the pain. One AnkylosingSpondylitis.net patient advocate said that, by the time her head hits the pillow, she feels “as if my entire body is screaming at me. The bottoms of my feet hurt, my knees, my SI joints, and my lower back hurt. I feel like a ball of pain, needles, and fire.”
At its worst, painsomnia can cause a “vicious cycle of insomnia and sleep problems causing or exacerbating…pain and vice versa,” according to one RheumatoidArthritis.net patient advocate. When a person doesn’t get enough sleep, one IrritableBowelSyndrome.net patient advocate mentioned, “your pain perception worsens.”
As with most symptoms, the effects of painsomnia aren’t just physical; they can also affect one’s emotional health and quality of life. Another AnkylosingSpondylitis.net patient advocate said that a night with painsomnia brings with it “the full knowledge that tomorrow’s responsibilities won’t evaporate just because refreshing sleep didn’t come.”
A key takeaway for healthcare companies is that experiences with painsomnia show the interconnected relationship between pain and insomnia and, in the eyes of many who experience it, the importance of focusing on solutions for both aspects simultaneously.
When MultipleSclerosis.net patient advocates talk about the “MS hug,” the opening line is often the same: although the name sounds lighthearted, it actually represents what can often be among the most unpleasant, painful or restrictive symptoms.
Nearly one in three Multiple Sclerosis In America 2021 respondents said they had experienced the MS hug as a symptom during the previous month. The MS hug is a type of dysesthesia, or an abnormal sensation that occurs without a physical stimulus. It is a painful and often restrictive sensation that is usually felt around the chest or torso – hence the “hug” – although it can be experienced in other parts of the body.
As is the case with many symptoms, people living with MS experience the MS hug in vastly different ways. The MS hug can be disabling for some while having less of an effect for others. For some, it’s a constant, persistent symptom while, for others, it might happen occasionally or not at all. Some who experience the MS hug can easily identify their triggers while the triggers remain random for others.
For example, one MultipleSclerosis.net patient advocate said her MS hug “worsens if I’m feeling overly tired or I’m experiencing a lot of stress.” Meanwhile, another advocate said she “can never pinpoint when it happens,” contributing to it being “my most stressing symptom.”
MultipleSclerosis.net patient advocates have very vivid and colorful ways of describing the MS hug. One advocate describes the experience as varying from “wearing a corset that’s too tight” to feeling “like a hungry snake has coiled around my waist.” Another advocate said it can feel like “you’ve laid out in the middle of the road to relax, only to have a cement truck slowly drive over your chest” or like “I had a black hole inside my chest, whose inescapable gravity was pulling all my ribs inwards towards a single infinitesimally small point in space.”
For people who have lived with MS for many years but never experienced the MS hug, it can sometimes be even more frightening and confusing. One community participant mentioned having first experienced the MS hug after two decades with MS and, due to experiencing it across the chest, “initially assumed I was having a cardiac problem.” In fact, this is a common misperception that could represent a communication opportunity for healthcare companies and providers.
Commonly known as “sausage digits” – or individually as “sausage fingers” and “sausage toes” – dactylitis is an often painful and sometimes disabling swelling of an entire finger or toe. It is commonly caused by swelling and inflammation of all of the tissues within a digit, including the joints, tendons and bones. This symptom, especially when it surfaces in the fingers, is commonly discussed within Health Union’s rheumatology communities, including AnkylosingSpondylitis.net, AxialSpondyloarthritis.net and Psoriatic-Arthritis.com.
Sausage digits represent a commonly occurring symptom for these conditions. For example, nearly six in 10 Psoriasis & Psoriatic Arthritis In America 2021 respondents living with psoriatic arthritis said they’ve experienced swollen fingers and toes, including “sausage digits,” during the previous month. From the Spondyloarthritis In America 2021 survey, half of respondents living with ankylosing spondylitis said they had experienced sausage digits during the previous month, while 46% of those living with axial spondyloarthritis had experienced the symptom.
In many cases of sausage fingers and toes, the digits aren’t simply a little bigger or more rounded. They may also be slightly red and even look deformed, and there is often physical pain involved. One Psoriatic-Arthritis.com patient advocate described her first experience with sausage fingers – also among her first psoriatic arthritis symptoms – as feeling “like someone was stabbing my finger with an icepick.”
Many who experience sausage digits can’t bend their affected fingers or toes due to the swelling. Another Psoriatic-Arthritis.com patient advocate depicted a particularly difficult experience when she “could barely make a closed fist” and “bending individual fingers was near impossible.”
Due to the visible nature of the symptom, sausage fingers can contribute to serious self-image problems. One patient advocate, before being diagnosed with psoriatic arthritis, recounted others “obnoxiously” remarking about her “sausage fingers” as a teen and “on bad days musing if liposuction was possible for fingers.” Years later, she was worried when she got engaged, which occurred just after a flare-up from both her psoriatic arthritis and Crohn’s disease, and “I was concerned about people asking to see the ring.”
These five terms – scanxiety, endo belly, painsomnia, MS hug and sausage fingers – by no means represent an exhaustive list of unique vocabulary patients often use to describe their health journeys. But paying attention to these terms – and any others that arise – and trying to understand what exactly they mean to the patient experience will go a long way in helping companies and providers “speak the language.” This, in turn, will aid in communicating more effectively with the patients they’re trying to reach.
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.