- 56% of Thyroid Eye Disease In America 2022 respondents felt that friends and family don’t understand the reality of living with TED
- 54% of Myasthenia Gravis In America 2022 respondents felt others don’t understand what they’re going through with myasthenia gravis
- 39% of Spinal Muscular Atrophy In America 2022 respondents say friends and family just don’t understand what it’s like to live with SMA
Regardless of the type of relationship – family, friend, romantic partner, coworker – a person’s inability to learn more about a health condition or its effect on a person’s quality of life can lead to significant frustration on both sides. For the person living with the rare condition, it can signal that the other person just doesn’t care about them or is unwilling to adapt.
A narcolepsy patient leader said she has “lost people that don’t understand me” and “experienced my fair share of relationships ending due to my condition, one way or another.” One Neuromyelitis-Optica.net patient leader summed it up by saying, “There will be some people that don’t understand what you’re going through and don’t feel the need to try either. Those relationships aren’t worth fighting for, don’t waste your time.”
This concern about others’ lack of understanding can acquire extra layers based on specific conditions, in addition to an individual’s unique situation and environment. For example, people living with “invisible conditions” might feel that others doubt their pain, fatigue or just how sick they feel simply because their symptoms aren’t necessarily external. Likewise, rare conditions with external, “visible” symptoms, such as thyroid eye disease or spinal muscular atrophy, might garner their own set of incorrect, faulty or blanket assumptions.
“Looking fine when we don’t feel fine has the potential to complicate our relationships further,” said one Myasthenia-Gravis.com patient leader. She follows that “it can lead to resentment when our spouses or our coworkers assume we are being lazy” and “confuse our children when we have enough energy to play one moment but need to rest the next.”
Family: ‘Your Biggest Support System’ & ‘A Huge Obstacle’
Across the board, being diagnosed and living with a rare condition tends to alter family dynamics, in both small and outsized ways, from impacting family holiday get-togethers to moving a few states away to be closer to clinical care.
The impact can, of course, be both positive and negative; more often than not, it’s a mixture of both throughout the health journey. As one Sleep-Disorders.net patient leader with narcolepsy put it, “Family can be your biggest support system, and they can also be a huge obstacle.”
That same patient leader recounts how, instead of the “‘ah-ha’ moment” she envisioned the family having together once she received her diagnosis, “it felt as though they didn’t believe me.” In fact, she believes her father’s reaction to the news “made my narcolepsy worse, and I had a very hard time dealing with him after this point.” Another narcolepsy patient leader said it sometimes feels like family members “forget why I need to sleep during the day, or why I seem to be so ‘moody’ all the time,” which she refers to as “an exhausting and unrelenting cycle.”
Unsurprisingly, a significant amount of In America respondents have indicated that their conditions have negatively impacted their relationships with family members, including:
- 31% of Thyroid Eye Disease In America 2022 respondents
- 28% of NMOSD In America 2022 respondents
- 27% of Sickle Cell Disease In America 2022 respondents
For others, living with their rare conditions has brought them closer to family members. One Neuromyelitis-Optica.net patient leader explained how being diagnosed with his condition brought him closer to his father, with whom he had previously had a strained relationship. Another NMOSD patient leader said she has become closer to her family since experiencing her first condition-related attack. “I could never repay them back for what they did with a smile on their face,” she said, “even though it was like their world was falling apart right in front of them.”
Some acknowledge that family members can sometimes take on a great deal of emotional – and, depending on the condition, physical – burden for their loved ones living with a rare condition. One SpinalMuscularAtrophy.net patient leader said his condition “probably affected my parents more than me” when he was younger. And a RareDisease.net patient leader expressed gratitude that her family has been supportive throughout her health journey, “but I know that it was difficult for them to see me in so much pain.”
For some, their condition has simply become baked into the day-to-day of their family life. One Cystic-Fibrosis.com patient leader said he had “vivid memories of different vacations with friends and family where time would be allocated for me to use my vest and nebulizers” – a daily necessity for people with the condition – “without cramping anyone’s schedule.”
Friends & Social Life: The Added Layers of ‘Good Friends’ & ‘Going Out’
Living with a rare condition can have a similar effect on friendships, with people often not understanding or simply unable to accommodate or adapt to health-specific needs. However, the socialization aspect of friendships – sometimes, simply the notion of “going out” – can add a whole new dimension of physical and emotional challenges. For example:
- Nearly 2/3 of Sleep Disorders In America 2021 respondents living with narcolepsy said the condition has negatively impacted their social life
- 44% of Myasthenia Gravis In America 2022 respondents said their condition impacts their social life or activities
- A third of Sickle Cell Disease In America 2022 respondents said their condition has significantly impacted their social life or relationships with friends
Depending on an individual’s condition, various symptoms and treatment side effects can make socializing a significant challenge. People living with thyroid eye disease may feel the need to withdraw from social events because they find it anxiety-inducing and “exhausting to have face-to-face conversations.” One Neuromyelitis-Optica.net patient leader discussed how her NMOSD made it impossible to drive at night to hang out with friends. Another patient leader said the cataplexy from her narcolepsy makes it “scary to leave” her house; despite this fear, she believes canceling on her friends is often “misread as being selfish, lazy, rude, or whatever explanation someone might come up with.”
Whether their friends actually perceive them this way or they feel it themselves, people living with rare conditions are often worried about being “bad friends” due to health-related decisions or the need to prioritize their health. One narcolepsy patient leader deals with brain fog from her idiopathic hypersomnia, which can lead to her “forgetting friends’ birthdays over and over, missing parties, sleeping through events”; this, she said, “made me look like a terrible friend, when I couldn’t even control what was happening.” When one Myasthenia-Gravis.com patient leader became “mostly bedridden, battling weakness, fatigue, and double vision” after being diagnosed, she “dropped out of weekly small groups at my church, quit my creative side business, and started saying no to get-togethers with friends.” A lot of her friendships “fell apart as I disappeared from social circles and social media.”
Some people with rare conditions are worried about burdening friends with their health needs. One SpinalMuscularAtrophy.net patient leader, who has physical limitations and uses a wheelchair, needed to learn “to allow others to help me…in areas such as going to the restroom or preparing a meal, but also on the emotional level.”
The flip side of striving not to burden others is that it can sometimes “feel like people don’t care enough about us” when friends don’t reach out or accommodate their needs. As one ThyroidEyeDisease.net patient leader put it, “it does feel good when a friend of mine checks in on me.” When they do, she says, “it is as if they are saying, ‘Hey, I’m here for you even though I don’t know exactly what you are going through.’”
Romantic Partners & Dating: Dealing with Commitment & Rejection
Dating and traversing a romantic relationship with a rare condition can bring a whole array of challenges, from deciding when to disclose their condition to dealing with impaired sexual function. As one Cystic-Fibrosis.com patient leader put it, dating with her condition “can feel like you’re in a storm.”
The stigma of dating with a rare condition is a common topic that pops up within Health Union’s rare condition communities. One SpinalMuscularAtrophy.net caregiver leader discussed the stigma that she feels society puts on people with certain conditions, especially a condition like spinal muscular atrophy that often causes severe physical limitations. “Unfortunately,” she said, “many people still view disability as a tragedy or burden.”
Due to this stigma, as one Neuromyelitis-Optica.net patient leader put it, “rejection is frequent.” And although rejection when dating can be difficult for anybody, one HSDisease.com patient leader mentions that “rejection for something you can’t control, like a chronic illness, really hurts.” Some patient leaders have dated people who have found the realities of their rare conditions too much to deal with, like one Sickle-Cell.com patient leader whose seven-year relationship ended partially because “he felt I would be a burden to the future he wanted.”
A big challenge for people with rare conditions is determining when – and how – to let a date or potential partner know about their condition. Another Sickle-Cell.com patient leader said she used to feel anxious whenever she would start dating somebody new. “I would always think about the things that could go wrong when I share with them my health issues or how they might react,” she said. One Myasthenia-Gravis.com patient leader wonders whether she will ever feel comfortable enough to truly open up and be authentic about her condition “and not have someone view me as depressing or attention-seeking.”
Some contemplate whether a partner can truly handle their needs, especially if health starts to decline. Some, especially those with progressive conditions, contemplate whether dating or having a romantic partner is even worth it. One Cystic-Fibrosis.com patient leader, for example, said she had previously “put so much pressure on myself to stay alone” because “I didn’t want to leave someone a widow.”
When romantic relationships work, many patient leaders have found it is because they acknowledge the impact their individual conditions can have and because their partners try to be as understanding and patient as possible. For example, one HSDisease.com patient leader discussed how her partner was receptive about her hidradenitis suppurativa from the beginning of their relationship. “He even did his own research and talked to me about what he found to see if there were more ways he could help,” she said.
Social Health: A Valuable Relationship Resource
Solutions for overcoming potential challenges with relationships – whether family, friends or partners – can differ based on conditions and individual health journeys. Fortunately, the evolution of the internet and social media provides unique opportunities for people with rare conditions to learn and engage with others who share their conditions and health experiences – something that may not be possible in person.
Social health can help people with various conditions feel more connected or get the emotional support they might not be able to get in person. For example:
- Nearly 6 in 10 NMOSD In America 2022 respondents said being a part of an online health community helps them feel less alone
- 43% of Spinal Muscular Atrophy In America 2022 respondents said they get more emotional support for their condition online than in person
- 35% of Hidradenitis Suppurativa In America 2021 respondents said online communities help them feel less lonely
These resources can provide people with rare conditions with the information and support they need to better navigate their health journeys, including their relationships. When one Sickle-Cell.com patient leader started sharing her experiences with sickle cell disease on Instagram, which helped her meet people “that could relate with me and not judge me,” she said she hit a turning point. In fact, she said she now has “more friends online than offline.”
Importantly, social health can also provide helpful resources for family, friends and partners to better understand the health journeys of their loved ones.
Better understanding the health journeys of people living with rare conditions, including the challenges they often face around relationships and their social lives, 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 RareDisease.net – and comprehensive, quantitative, condition-specific data.