For the past four and a half years, I have suffered from a constant, unremitting headache that sits persistently behind my right eye. This headache is, at its baseline, bearable: a 5 out of 10 on my personal pain scale. At times, it spikes into migrainous territory where, on top of an increased level of pain, I can have any slew of symptoms, from dizziness and nausea to light sensitivity and even aphasia. This constant pain, these spikes, leave me exhausted and sometimes even bedridden.
It wasn’t until a few years into my endless headache that I was able to put a name to my disorder: New Daily Persistent Headache (NDPH). NDPH has no known cause or successfully documented treatment plan. In fact, it seems that the only things that really tie together individual cases of NDPH are a never-ending headache resistant to most available treatments, and the fact that most people with NDPH can pinpoint an exact date their headache started. Mine began on October 28, 2013.
For anyone who lives outside the world of chronic illness, the idea of constant, often outwardly invisible pain or illness is simply unimaginable. When my NDPH began, and as new symptoms and so have possible secondary diagnoses have emerged, I found myself surrounded by people in my life who loved and supported me but just didn’t have to capacity to relate to me. They wanted to help me, to comfort me, but they just didn’t know what to say. They had no frame of reference for my constant pain and it wasn’t something I could aptly describe. It had to be experienced. It had to be felt. Back then, it was as new and exhausting to me as it was to them.
That’s when my social media journey began. I got online to seek people like me, people who could relate to what I was experiencing, people I didn’t have to over-explain things to. And I found a wealth of communities, such as The Mighty, that bring people together, that provide space for us to talk about what we are going through with chronic illness. I have even suggested treatment options to my neurologist that came directly from these message boards.
It may seem weird for a person with a chronic headache to take comfort in a screen, but when I am communicating with people who are experiencing similar health trials, I feel more understood. It brings light to my situation, and I find an incredible sense of peace in knowing that I am not alone in this, that there are others who know exactly what I am going through and that we can help and comfort each other.
Beyond this sense of community, something I so desperately needed and still need, I’ve found that social media has provided me with an outlet to finally share my experiences with the people in my life. It’s easier sometimes to compose Facebook or Instagram posts about my latest treatment, or when I’m having a particularly painful day, than it is to have to tell people over and over again about my situation. Sharing these moments, letting others into my story, has given me the strength to talk to those who know me in real life. It has also helped me to connect with others who have chronic illnesses in my own social circles, people whose experiences I would have otherwise never known about.
Once, after posting about a particularly rough headache day, a woman who was in my MFA program sent me a private message about her experiences with headaches. We went had been in school together for years and I had no idea. Now, we frequently communicate about our trials and triumphs, offering suggestions and support. These kinds of communications have made all the difference to me.
Cory Martin, author of the memoir Love Sick, says she too has found much solace and strength through social media. She was diagnosed with Multiple Sclerosis in 2007, “when communities like that didn’t exist, only chat rooms where people would just echo all the shitty things that were happening to them and it made me really depressed,” she told the Daily Dot. “I’ve connected with so many MS warrior folks on Instagram that make dealing with the disease much easier.”
Ashley Sargent keeps an Instagram journal of her experience with Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). On it, she shares both her ups and her downs, from having a fun night out to needing abdomen injections, as well as information about treatment and home remedies.
“My favorite thing about social media is that it helped me meet other people with my neurological disorder,” she told the Daily Dot. “Social media made me feel like I wasn’t alone and gave me a chance to connect with people I would never have been able to meet otherwise. It gave me a community after over a decade of feeling isolated and alone.”
Other Instagrams like Suffering the Silence and Hurt Blogger are also places of solace and inspiration. I particularly love Om Home Life, as it’s a great source of support for people with headaches. Even on Twitter, I engage with A Chronic Voice and the Chronic Life, safe spaces where followers are polite and supportive, even sharing resources on things like accessible travel tips to coordinating local meetups. Organizations like the Global Healthy Living Foundation also have a strong social media presence and provide advocacy for the chronic illness community, like publishing its own healthcare guide.
Then, of course, there is something to be said about physical effects of raising someone’s spirits. Not only does participation in social media provide much needed psychosocial support for the chronically ill, but it can even have medical benefits. According to a study published in the American Journal of Medicine in 2015, “using social media to provide social, emotional, or experiential support in chronic disease, especially with Facebook and blogs, appears most likely to improve patient care.” It seems researchers may even consider implementing social media as an integral part of patient care in the future.
The truth is, chronic illness is isolating and it is lonely. I have spent days, even weeks at a time, unable to leave my house or even to get out of bed. But I can always log onto Facebook and see what’s going on in the lives of those around me, share my own experiences, and get the love and support I so desperately need to not just survive, but thrive, in the midst of my very real physical and emotional pain. What a gift, not just for my illness, but for the meaningful, life-giving relationships I am getting to build.