In case you missed it—there’s a ridiculous article by the Daily Mail floating around entitled “Addicted to being sad: Teenage girls with invisible illnesses – known as “Spoonies” – post TikToks of themselves crying or in a hospital bed to generate thousands of likes – as experts raise concerns over internet-induced wave of mass anxiety”. The article was shared September 7th, 2022, and written by a “senior journalist” named Emma James.
The article discusses how teenage girls and young women post upsetting footage and commentary on social media about their “invisible illnesses” to gain attention and “likes” and bashes “Spoonies” for giving people a behind-the-scenes look at the reality of their chronic condition. Hold UP. As someone who has lived with Crohn’s disease for more than 17 years, who is patient advocate, and works tirelessly to empower and educate others about life with inflammatory bowel disease, by candidly sharing on social media and through my blog, I find it incredibly disheartening and worrisome that a story of this nature is in circulation.
The ableist mentally shines bright
How disappointing that a “news outlet” takes the time to belittle people who are battling debilitating and unpredictable illnesses and sharing their struggles not for attention, but for support and camaraderie. Unless you have a chronic illness, you don’t have the slightest clue about what it’s like to wake up each day and not know what the next hour is going to bring. Unless you have a chronic illness, you can’t begin to imagine the stress, worry, and anxiety that comes along with diseases that limit us and often set us up for failure when it comes to trying to keep up with the rest of society. Unless you have a chronic illness, you have no idea how isolating and overwhelming it can be to be young and unhealthy, different than your peers, while fearing what your future is going to hold. Unless you have a chronic illness, you can’t fathom what it’s like to juggle multiple specialists, appointments, medications, insurance, specialty pharmacies, and screening tests… just to survive. It’s imperative those with invisible chronic illnesses share their stories and show others that what they are going through.
Articles like this are extremely damaging and triggering to those who suffer in silence, the newly diagnosed, and furthers the fear of what could happen if you decide to come out of the “proverbial closet” publicly and share about your health struggles.
Patient communities NEED you to share
When I was diagnosed with Crohn’s disease at age 21 in July 2005, Facebook hadn’t even been out for a year. No one was going on social media and sharing they had a disease. I felt like I was on a desert island, all alone with a diagnosis that flipped my world as I knew it upside down. As an aspiring TV journalist, two months out of college graduation, I had no idea how I was going to function and follow my dreams. Nobody wants a chronic illness diagnosis. Nobody asks for this. Nobody wants to suffer so they can have “likes” and attention on social media, trust me. Never in my life have I seen people encouraging others to lie to their doctors about getting the diagnosis that they want.
With diseases like inflammatory bowel disease, this is not something you can fake. A diagnosis is received after scopes, scans, and labs, reflect that this is in fact the case. You don’t just walk into a doctor’s office and say you aren’t feeling well and exaggerate abdominal pain. It’s not a competition of who is “sickest,” people are sharing what they are going through for a variety of reasons. When someone is in a hospital bed, they may share for support, advice, and prayers. When someone is gearing up for a colonoscopy, they may share so they can get tips for easing the prep or coping with the worry of the unknown. When someone is pregnant and flaring, they may share to hear from other IBD moms who have been there before. The examples are endless. Patients are not haphazardly concocting up social media content and lies about their medical struggles to see who is going to get more attention. This is not “attention” people want.
By claiming we share for attention it goes against everything we stand for and belittles the lifechanging work patient advocates are doing to support and comfort their peers. As a patient advocate myself, I do so much behind the scenes “work” to guide those in the IBD community and help them every step of the way. It’s about helping others from the bottom of your heart and being the voice you needed to hear upon diagnosis and through milestones in life. It’s genuinely finding connections with those who are not just strangers on the internet, but quickly become your closest confidantes and resources. Since coming out and sharing I had Crohn’s disease in 2015, I went from having family and friends who didn’t have Crohn’s offering me support, to an army of thousands of members in the IBD family I can rely on who “get it” and are available right at my fingertips. THIS IS PRICELESS.
Sorry not sorry for the “upsetting content”
The article states “thousands of teens are banding together on social media as part of the movement” to support the Spoon theory. Imagine what it’s like to be living this reality versus just having to view a post on social media. Can you pause and put yourself in the hospital bed or on the operating table or on the couch about to do a painful injection and think about the pain and suffering those with chronic illness are forced to endure just to survive like the rest of society? It’s privileged to lash out against those who are doing all they can to show others what their lives consist of rather than bottling everything up—THAT is damaging, THAT is not healthy. Must be nice to have the privilege to keep scrolling and living your healthy life and only see a few seconds on your screen.
Should chronic illness patients be smiling as they’re suffering in hospital beds? Is it not normal to be crying when you’re worried and scared and can’t help but get emotional with all that’s on your shoulders? No one is complaining. It’s the stark reality. It’s heavy. It’s no surprise that more than 30% of people with IBD also deal with mental health issues and anxiety because life with the disease is so heavy.
It’s not about the money
Can we all pause and laugh about the fact the article claims those with chronic illness post on social media for the money. Hilarious. Get a grip. Even as a well-established and trusted “health influencer” within the IBD community, when companies reach out to me, it’s often to try products, not get a paycheck. When I am paid for my advocacy work it’s working diligently like your job as a journalist to write articles, create social media copy, and educate others about what my life is like with Crohn’s. I get compensated like any other human for using my skills and expertise, along with my precious time and energy, to sit on advisory boards and offer input and perspective for marketing and awareness campaigns. My job is not to be a patient, my “job” is to take what I’ve learned and use it to make a difference and help others.
This is not for show. Digging up past medical trauma and flare ups is not enjoyable. If businesses and pharmaceutical companies want to collaborate with chronic illness patients, they should be paying us for our invaluable intel and understanding. The article states patients have adopted “victim mentalities” …wow…and “communities of grievances” … when medical professionals are out of line or treat patients without respect, you better believe your ass they should be called out. How is change going to happen and life for chronic illness patients going to improve if we sit quietly. Be loud, my friends. Don’t allow articles like this to stop you from sharing. We NEED your valid experiences. You deserve to be heard. You matter. Even though the rest of society may be rolling their eyes or trying to stop us, they won’t, and they can’t.
I don’t want to go back to 2005 when I was all alone in my struggles with Crohn’s disease. I want to stay in 2022 when I can post whatever I want, whenever I want about my trials and triumphs as a woman, mother, and wife with Crohn’s disease and not fear judgement. Sometimes I’m thriving, sometimes I’m struggling. It’s vital that those with chronic illness continue to honestly share their stories on social media to provide clarity, education, and connection to those who relate wholeheartedly.
So, dear Emma, from one journalist to another, please start sharing stories that matter—don’t go after stories for attention or follow the adage, “it bleeds, it leads.” Seems like you are the one going after the likes. You should know better.
Sign the Petition
There has been outrage in the chronic illness community about this article—many feeling triggered and upset by the accusations and the claims made about Spoonies. An online petition has been created to have this Daily Mail article taken down—you can sign the petition by clicking here.
I’ve had my fair share of surprises and obstacles with Crohn’s disease. My patient journey includes numerous surgeries, multiple doctor appointments a week, sitting in hospitals getting Remicade infusions, switching up medications to tame a flare and my all-time favorite, hospitalizations for days at a time. Please note the sarcasm in that last sentence.
When the pain presented, I tried everything I could to avoid the trip. I just wanted to stay home and live my life with a newborn, enjoy the snuggles and oddly enough the 3 am feedings. Then, the time came when I couldn’t even get through a feeding without needing to set him down so I could run to the bathroom. I knew it was time.
It was a brisk January morning. Tears filled my eyes as I was overcome with emotion. Our rainbow baby is here, safe and sound. Another pregnancy behind me, a pregnancy that silenced my Crohn’s disease and provided sweet reprieve from my chronic illness. It was time to take Sophia home and start our life as a family of four.
Each time I have a procedure or deal with painful symptoms, I see their faces, I say their names in my head, and it brings me a sense of calm. My goal when Reid was born, was to stay out of the hospital until he could walk, luckily that’s been the case. He’ll be two in March. Now, I have that same goal following the arrival of my daughter.
Motherhood and IBD can be a difficult and challenging balance. Some days the fatigue and symptoms are so debilitating you feel like you’re falling short. At the same time, the days where you’re feeling well, remind you that you are so much more than your disease. Just because you have a chronic illness, doesn’t mean you are robbed of experiencing the beauty of life and what it feels like to have your very own family.
It all starts with recognizing where you are in your patient journey and then determining when your symptoms and body are in the best shape to get pregnant. While everyone’s disease experience is different—the worries, concerns and fears associated with parenting and chronic illness are often the same. Always know you are never alone. Communicating these feelings with those around you, makes all the difference. Lean on our patient community and all those who’ve lived your reality.
When Sophia Shea entered the world January 14, 2019, our family received a wonderful gift. Between our son Reid and our baby girl, we could not be more blessed. My chronic illness has given me such an appreciation for health and for life in general. With the pregnancies behind me, I often reflect on where I started back at age 21 in 2005. At that time, in my eyes, I was Natalie and I had Crohn’s disease. There was no telling what my future would hold. Now, nearly 14 years later, at age 35, I’m so much more. I’m a mom to two under two. I’m a wife. I’m a daughter. I’m a sister. I’m an aunt. I’m a friend. And I also have Crohn’s.
Since the moment we met in 2013, and through all the ups and downs my Crohn’s disease has caused in our lives, he’s been my safe place and my protector. During my speech, I talked about how everybody needs “a Bobby.” A person who sees you for more than your disease. A person who doesn’t shudder at the thought of seeing you at your lowest for days on end in a hospital bed. A person who gets the day to day management and emotional toll chronic illness takes on not only the patient, but the couple and the family.
Then I turned to her boyfriend and said, “and you are her rock and her caretaker.” They laughed and told me I guessed right. Isn’t it amazing how easy it is to spot this type of support? I was a complete stranger, once in her shoes. Young. Dating. Wondering about my future. Their names are Emily and Kellen.
Only 22 years old, so much of her life ahead of her. And she’s found the person who looks at her, despite her illness, and loves her for it. The Bobbys and the Kellens of the world are the real deal. If you haven’t found yours yet, trust me…they exist and they are out there.
Three days later, at 10 pm the night before we were going to hang out, Amanda was admitted back into the hospital.
lights camera crohn's 