Why do online activism and visibility matter? This is how you can get started.
For many years, I knew, that something wasn’t right. I didn’t feel healthy, but my doctors kept telling me that I was fine. I had one infection after the other, I couldn’t sleep, I couldn’t focus, I had issues with my blood circulation, with my digestion, and I just kept feeling weaker and weaker. At some point, getting out of bed would become a horrible ordeal each day. Every day I felt like I had to fight my own body to keep going. And I really wanted to keep going, and to ignore all these signals that my body sent me, that something wasn’t right. But the more I kept going, and the more I ignored these signals, the worse I got. I got diagnosed with allergies, and at some point, with depression. I tried everything my doctors told me, I started therapy, took antidepressants and I tried to live a lifestyle as healthy as possible, with good nutrition and plenty of movement. But none of that helped. Still, my condition became worse and worse every year. It took over 7 years for a doctor to finally listen to me. To really hear, what I had to say. He diagnosed me with ME/CFS - and this is where my journey would only begin.
What is ME/CFS?
ME/CFS stands for Myalgic Encephalomyelitis and it is a neuroimmune disease that affects the entire body. The disease is also often referred to as "Chronic Fatigue Syndrome" - although this disease contains so much more than just fatigue exhaustion, which is why the name is not very popular among patients and patient organizations. Attempts at renaming the disease into “SEID” (Systemic Exertional Intolerance Disease) were unsuccessful. It is estimated, that 17-24 million people worldwide have ME/CFS.
The main symptom of the illness is PEM, which stands for "Post Exertional Malaise" and describes a worsening of symptoms after too much activity. So, if you overexert yourself, your condition worsens, and neither rest or sleep can improve that. This is what distinguishes the illness from other fatigue-related conditions.
ME/CFS exists on a spectrum, some can still manage to work or have some hobbies, others who are on the more severe end of the spectrum may be unable to leave their beds and even light activities like brushing their teeth can lead to PEM. But no matter where you are on the spectrum - ME/CFS is a life changing and devastating illness.
If you want to read more about ME/CFS, you can read this Article, and if you want to help ME/CFS patients, check out the donation links below.
The fight for recognition
Even though this illness is not uncommon by any means, most people have no idea about it, and even many doctors don't really have an idea on how to treat it correctly. Many doctors that I met since being diagnosed, haven't even heard of the illness before. You almost have no other chance then to become an advocate for your own illness, because most people you will meet have never heard about it before.
The worst thing about this illness is, that in addition to all of these symptoms that you have to fight, you also have to fight to be taken seriously. It often takes many years to get a correct diagnosis, as there are still no clear laboratory tests. The average time to receive a diagnosis is currently between 5-8 years. Only a few doctors are familiar with the illness and take it seriously. Many of those affected are initially diagnosed with a mental illness. You start taking antidepressants, you start moving, and you still feel worse. Because too much activity beyond one's own limits can lead to the condition worsening even more.
As with many other rare diseases (although ME/CFS is not really rare by definition) many patients face medical gaslighting and discrimination, and have to fight for years to get the help that they need. Even though the disease has been recognized by the WHO, many people still do not take it seriously and doubt patients. This leads to patients often not receiving any support from the health system or from public authorities. I was told so many things by doctors, that made me completely insecure and lose trust in myself. Among other things, I was told that this disease is not a thing, and that I was just trying to avoid my responsibilities. While in reality, all I wanted was to get well again. Even though you have no energy left in your body, you have to start advocating for yourself, so that people start listening to you.
Seeking help and being turned away without getting any help and facing years of medical gaslighting is very hurtful and grueling. For years, patients have been fighting for recognition, more medical care and more research around the world. Research now seems to be picking up speed thanks to Long Covid, but there is still a long way to go.
Taboos are there to be broken
All of these experiences created the will in me, to do something. So many people in the world are affected by this disease, but hardly anyone knows about it. How can that be? So I started writing. About my experiences, about my wishes, about my fears. For me, writing wasn't just therapeutic. It connected me to many other people who had gone through similar things. People who have the same fears, desires and worries. Suddenly I realized: there are so many out there who feel the same way. I realized, that I am not alone.
At first I was hesitant and also a bit scared to be so open about my diagnosis. Some had warned me not to speak about it publicly, because chronically ill people often have poorer chances of getting a job. But just this fact really sparked a fire in me. Why do people with chronic illnesses have worse chances in the job market? Why are we regarded as less valuable as soon as we are restricted in our performance due to an illness?
There are so many stereotypes about chronic illness, and they are so deeply unfair and untrue. We are not lazy. People think we are not trying hard enough, or that we don’t care about our health. Believe me, we do. But reality just doesn’t always work the way we want it to. Sometimes we try our hardest to do everything right. And sometimes we still get sick, and you feel betrayed by your own body. Dealing with this is hard, but sometimes dealing with all the terrible things people say to you, and the way you are suddenly being treated for something that is beyond your control, is even harder.
Together we are strong
Through connecting with other people, who have been through similar things, I have learned a lot of valuable things. Among other things, I learned to stand up for myself and for others. I learned that I am valuable for who I am. That being chronically ill doesn't have to be a taboo. I realized I have a voice that deserves to be heard. I didn't feel so helpless anymore.
After years and years of wondering what was wrong with me, I suddenly realized that there was nothing "wrong" with me as a person. I was ok and valuable just the way I was, and I deserved to stand up for my own rights. Without the support of this online community, I probably wouldn't have come to this conclusion, at least not as fast as I did. I would have felt alone for many, many more years.
The more people start talking about their experiences, the more we can break these taboos. The more points of contact there are, the more we can learn from other perspectives and empathize with new situations. This is the great potential of social media: anyone can create an account and start talking. You don't have to ask to be included first. And someone might listen to your story and learn something from it.
To show yourself so publicly and vulnerably can be tedious and exhausting at times.
There are days when you might think: “What am I doing this for?” And then you get a message in which someone thanks you. "I feel understood through your texts". Or “Now I understand my chronically ill friend better”. Then you are reminded of the value of opening up and taking other people with you along the way.
This is where the strength lies when people open up and talk about the things that have happened to them: you realize that you are not alone. And the more people I got to know who felt the same way, the more I noticed: we are many. And we won't give up.
Where to start?
Sometimes people ask me: “How can I do this? I would like to speak about my experiences too, but I don’t know how or where to start.”
The thing is: there isn’t a recipe for online advocacy. Everyone has to find their own way.
And that is the beautiful thing: every perspective is different. Every experience is different. Every story is different. And that is the potential of social media: it gives us the chance to hear so many different stories and perspectives, that we otherwise wouldn’t have heard. So, if you ever doubt yourself, or wonder if your story is worth being heard: Yes, it absolutely is.
And don’t put yourself under pressure. If you can’t post as much, your voice is still valid. Some people post every day; some people post maybe once every week, some post once a month or even less. It is ok to go at your own pace and to stick with what feels natural to you. Even though many Instagram-gurus might disagree on this, but when it comes to advocacy, quality definitely goes over quantity.
One thing you shouldn’t do is to compare yourself. Everyone is different. Some people have the energy and the resources to create posts every single day, some people do not, and that is ok. Recognize, what you are good at, and how posting online makes you feel. If you realize you enjoy it immensely and you can’t get enough of it- good! If you realize it stresses you out and you just can’t be active every day- that’s also good. And if you realize that online advocacy just isn’t for you- that is also fine. There are always ways for us to play to our strengths, and that’s what we should dedicate our time and energy to.
Find the right medium
There are so many different platforms, and so many different formats in which you can post online. There is Instagram, TikTok, YouTube, Twitter, and so many more. You can make videos, in long or in short form, you can write texts, you can make podcasts, you can take pictures - whatever medium feels right for you is the one you will be most successful with.
The good thing about social media: anyone can create an account and start posting. Although there is a lot to be said about accessibility on all of these platforms, the good thing about them is that you don’t need to wait for an invitation to be included. You can just start creating in your own way, and maybe some people will find you and follow you along the way.
My tip is: start creating content for different platforms and formats. Trying out on a platform like Instagram has the benefit, that you don’t need a lot of effort or technical know-how to start creating posts. And there is a wide variety of formats you can try out: photos, videos, infographics, and so on. By trying out different formats, you can see, what comes more naturally to you. Maybe it is easier to you to write everything down. Or maybe it’s easier to just speak and create videos. Or you like to express yourself in more artistic, abstract ways, such as art or music. Whatever your way of expressing yourself is, know, that that is ok and you deserve your voice to be heard. And: people usually don’t care if your content is perfectly planned out and flawlessly aesthetic from the start. Some people are messy, and a bit chaotic, and not at all polished, but they still grow substantially, because people enjoy what they have to say. And that’s what matters. People don’t follow you for the perfect Instagram feed, they follow you because what you have to say resonates with them, or they learn something new every time, or they feel seen or heard.
Stressing out over perfection is something I see a lot, that holds people back from posting on Instagram, when in reality that is really secondary, and something you can learn as you go along. Some people just post screenshots of their tweets with no editing whatsoever, and they grow substantially, just because the content of the tweets is so good and to the point. Some people stress over looking well put together in all of their videos, while there are so many people who grow substantially on TikTok, who don’t care about perfect makeup, outfits, lighting or backgrounds – they just start talking. If what you have to say is good, people will follow you, no matter if you have the perfect aesthetic or not. The content is what truly counts, everything else is just fine tuning.
Try out different things and stick with what you're good at
If you are only starting out: give yourself enough time to try out different things. After some time you will see, which formats work best in terms of resonance, but also which ones are the most fun for you to create. And that's an important point: If it's not fun to you or if it doesn't "spark joy" as Marie Condo would say, you won't be able to stick with it long term.
No amount of perfect planning, scheduling and bulk-creating will help you stay consistent, if you don't enjoy what you do. And while we shouldn't stress ourselves about posting on a super tight schedule, especially when we have a chronic illness and we are already limited in our energy, some level of consistency is important for long term growth, whether that is once a week, once a month or somewhere in between. If you choose a topic or a format that doesn't bring you some form of joy and you feel extremely stressed out about it every time you post, you won't be able to do it in the long run. So if after a few weeks of trying different things you realize that taking photos and editing them doesn't give you any joy, but filming spontaneous and funny short-form videos is super fun: then stick with that! Or if you realize that talking to the camera really isn't your thing and you'd rather write: that's where you should put your focus on.
Of course, some of these things may need some getting used to and will get easier with time, so don't give up with time. Also, your interests will change over time, and that is also ok. The thing is: the more you will stick to your strengths, the easier you will make it for yourself.
And whenever you realize you are in a creative rut: allow yourself some time off the internet and take a break. This can do wonders in re-sparking your creativity and discovering new things you'd like to talk about.
Pro tip: use your good days to create content in bulk, so you can rest on your bad days and still stick with a schedule.
I always have some posts in the pipeline, so I have something I can post every week, even if I do not have the energy to create anything new. Creating a few posts at once on a good day where your creativity and motivation is high is a strategy that many creators use and that can save you from a lot of stress!
Online self-care and dealing with hate
Self-protection comes first, also on the internet. This topic could be a whole article by itself, but basically, here are some things to keep in mind:
The good news first: In my experience, the positive comments and feedback completely outweigh the negative ones. Of course, sometimes when we’re feeling low and down about ourselves, one negative comment amongst hundreds of positive ones can make us feel like crap for the rest of the day. This is a process that we all need to learn in life: not letting one piece of criticism ruin our self- confidence and realizing, that we will never be able to please everyone.Don't let a few people being ignorant in your comment section make you feel like all you do is completely worthless.
Also: we need to learn to differentiate between constrictive criticism and blatant hate. Constructive criticism is important for us; it helps us in our growth and in becoming a better creator. Blatant hate will not help us; it is not constructive or helpful in any way. Some people are just there to provoke. This is where we have to learn to say: “stop!”
It is ok to stop having a conversation when you realize that it is just draining your energy. It is ok to take a break and to think about a comment or a message for a few days before answering. Sometimes a good answer needs a few days and that is perfectly fine. Do not feel pressured into being available 24/7. Especially when you already have a chronic illness, it is important to learn how to take care of yourself on the internet and how to protect your boundaries. And if someone isn’t good for you or acting blatantly disrespectful towards you: it is perfectly ok to use the block button. It doesn’t make you a bad person. You wouldn’t invite a rude and disrespectful person into your home, so why would we tolerate them into our virtual spaces?
Also, it is ok to lose followers along the way. This was something that would really stress me out in the beginning, and something that I had to get comfortable with. But it is perfectly normal to lose followers along the way. Having a few followers who really appreciate what you do is so much more valuable than having a bunch of followers who don’t really care about who you are and what you have to say. And there will always be someone out there, who really appreciates what you do and who is excited about every post you make. These are the people you should focus on.
Your voice matters
If you decide that you want to try out online activism, or you just would like to be more vocal on the internet and start sharing your journey: I can only encourage you to just start and try it out, and see how it feels. The more people who share their stories, the more perspectives we will be able to gain. The more, the merrier! Together we are strong, and together we can move mountains. Never forget, that your voice matters, and it deserves to be heard.
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If you want to know more about online advocacy and what impact it can have, you can watch mine and @bianca.rosemarie's in depth-talk about it in our online session at the conference held by the Austrian Behindertenrat here. (In german language)
If you want to help ME/CFS patients around the world, consider donating to the Open Medicine Foundation.