How Social Media connects people with invisible disabilities and a chronic illness

Some use their real names, while others prefer to remain anonymous – people with invisible disabilities and chronic illnesses post on social media about their lives, their symptoms and share what’s on their mind. On Instagram, they use hashtags like #chronicillness, #chronicallyill, #invisiblydisabled and #invisiblydisabledlookslike. The hashtags refer to various diagnoses ranging from Crohn's disease, multiple sclerosis and Lupus, to epilepsy and endometriosis.

Social networking sites are often a popular first step for many who have recently been diagnosed with an illness. Julia Lüttmann took the same route a few short weeks ago when she was first diagnosed with multiple sclerosis. She wanted to talk to people who understand her, who are able to relate to her fears and worries and who might be able to share some valuable tips and information with her. She was able to accomplish this via social media. And since she has always had a love of writing, she started to write her story and shared it on Instagram. "At first, I simply did it for my own benefit – but the positive feedback I got from others encouraged me to take things further," Lüttmann remembers. "Being open has so far only yielded great experiences. I get several kind posts every day where people from all walks of life give me positive feedback and encouragement."

One time, a young woman shared with her that doctors suspected she had MS but luckily that ended up not being the case at the time. Since her symptoms had subsided, she decided not to go to a follow-up exam. "But after she came across my Instagram account and read my posts, she decided to repeat the testing. I thought that was very touching," says Lüttmann. "Her candor has shown me that I give people food for thought with what I do and that I actually reach them."

A recent story on Julia Lüttmann's Instagram channel shows her rolling her eyes in response to the phrase "But you don’t look sick!" Probably everyone living with invisible disabilities and chronic illnesses has heard this saying at least once in their life. On Instagram, the hashtag #butyoudontlooksick has over 340,000 posts. The same applies to Twitter.

Katarina B. from Switzerland also lives with MS and comorbid ADHD symptoms and is very familiar with this saying, as she revealed in a REHACARE.com interview in 2017: "When I mention that I have MS and won’t be able to be actively engaged in a club, for example, people usually look at me in disbelief. That’s why I like to use the phrase, 'But you don’t look sick', on social networks because it’s something I hear very often since all of my symptoms are invisible. However, that doesn’t mean they don’t exist. There is my dizziness, for example, my sensory issues, the fact that I am not able to sense temperature differences in most of my fingers and that my muscles tense up and many other things that people cannot see."

Many people whose symptoms appear hidden at first or second glance share Katarina B.’s experience. Some only respond to the dreaded saying in social media posts, while others might take a somewhat more confrontational approach. Julia Lüttmann’s comeback in this case is that she had not been aware that a person was supposed to look a certain way when he or she is sick. She then asks the other person to explain what exactly a person should look like in this setting.

Lüttmann's openness on Instagram also impacts the way she lives her "offline" life. She actually only talks candidly about her illness with a few select people. That’s because she doesn’t want or need their pity and because she knows it’s difficult for people to show compassion without pitying the person at the same time. However, at this point, she is able to take a more relaxed approach when dealing with friends and family: "I know that most of the people around me can now learn how I really feel. But when they do, I am not right there face-to-face with them and have to deal with how it probably upsets them. Everyone can read my posts in the privacy of their own home, which give them time to contemplate things at their own pace. When I meet up with the same people, they are already calmer and more relaxed about the situation and I no longer get the feeling that I am the one that actually needs to comfort THEM."

In general, Julia Lüttmann wished that empathy and understanding people with special needs would not be luxury in our society but a matter of course. And she also wished all of us would ask ourselves how we would feel in this situation? That’s why it is so crucial to – among other things – raise awareness and make people with chronic illnesses and invisible disabilities more tangible to society. Various social media channels can certainly help make their voices heard and increasingly shine a light on their invisibility.

Julia Lüttmann certainly speaks for many other people with invisible disabilities when she says: "I want to help myself and others, who are affected, but I also want to raise awareness and educate those who have been spared a similar fate in their lives up to now. Not all of us get to live a simple and easy life and we need and deserve a voice in this society."