If you follow me on social media (SM), then you know that we had a bit of an internet snafu that left us without internet for 4.5 days. I know that sounds like a total “First World Problem,” but it helped highlight how important access to internet and social media is for many spoonies who spend the majority of their time at home in bed.
I’m sure a lot of people are thinking, “duh” or “who cares why you like social media?” But, I feel it’s important to talk about the very real impact SM has in the lives of people with chronic illnesses and disabilities. I have had people actually say “if you can be on social media, then you can work.” These people don’t seem to understand a) how different being active on SM is from having a full time job, or b) how important the ability to connect with other spoonies is for me. There seems to be a widely held belief that if you can spend time online then you can work, and that if you can afford internet and/or a phone then you don’t need government assistance of any kind (including disability).
Now, I recognize that there are downsides of SM. The sense of anonymity has brought out the worst in many people. The comments sections are not safe spaces, no matter what the article or post is about! It can also have the effect of making people feel connected and “caught up” with each other’s lives via posts without ever having to actually talk to each other. Studies have shown that the brain reacts to SM similarly to how it reacts to cocaine. Bullying has reached new levels. People are becoming famous due to videos or pictures taken without their consent and used to mock or shame them. Misunderstandings are common. You get the picture.
However, for many people with chronic illnesses, social media is a lifeline to the world outside their homes.
During my worst flairs, I often won’t leave the house for weeks at a time other than to go to the doctor’s office. There is a whole world existing out there, beyond the confines of my bedroom, that I feel disconnected from. SM is one of the few things that allows me to feel connected with others. To feel like I’m still part of the world even if I can’t step outside. That’s a pretty important feeling for me.
There are a bunch of spoonies on SM! Not long after POTS disabled me, I found support groups online. Since that day, I have joined several different SM support groups, and become an active member in various spoonie/disability communities on FB, Twitter, Instagram, and Pinterest. These groups and communities can really only be found online. I’m sure there are local support groups for disabilities and chronic illnesses in many cities, but as many chronic illnesses make getting out of the house to socialize difficult, well…you can understand why it can be difficult to attend regularly.
These online communities allow thousands of spoonies to find and support each other online. Some of these groups are secret so that we can discuss personal things and ask tmi questions without worrying that non-spoonie people will see it and judge us for it. Many communities, often informal ie “Disability Twitter,” are visible to the public and not only offer fellow spoonies with support, but also help educate others and raise awareness. Twitter, in particular, has helped open my eyes to the long reach of ableism in our culture, an -ism so accepted that most people have never even heard of it.
When I’m in a bad flare, or struggling with depression and anxiety, I know that I can turn to these communities for understanding and support. Even with an extremely supportive significant other, it is an amazing feeling to be able to connect with people who just “get” it. Without ever having met any of these people in person, I feel tied to them as we share both the highs and extremely low lows of our illnesses. My spoonie friends can also help life me up through laughter as we crack jokes about our common experiences. While it doesn’t take the pain away, it makes it a little easier to handle.
There are many spoonies out there who don’t have supportive spouses, family, or friends. There are spoonies who live with people who refuse to accept the reality of their illnesses, and even deny them access to care. For them, these online communities are the only source of caring and empathy that they see. When access to doctors is limited, learning how others with the same illnesses treat their symptoms can save them a lot of hurt and pain. Even just having someone say, “I believe you” is a powerful thing that many people don’t get outside of these groups. The value of having your experience validated by others cannot be overstated.
When people complain about people on Welfare, or any kind of government assistance, using funds to pay for internet services or spending time on social media instead of working 24/7 at finding a job, I think about this and how cruel it is to think that someone should be denied this sense of community just because they aren’t wealthy. Without access to SM, I would never have sought the advice of dysautonomia experts at Vanderbilt, or pushed my doctors to screen me for Ehlers Danlos Syndrome (which I have). I would never have discovered many of the treatments I use to help me cope with my illnesses. My life would look incredibly different today without access to SM and these communities.
If you find yourself tempted to disparage a person with chronic illnesses for their frequent use of SM, don’t. Just don’t. If you don’t know if a person has a chronic illness or is on government assistance but you’re considering making fun of their SM use, don’t. Because, it really isn’t your business as to why someone is using SM, how often they are using it, what (if any) illnesses they have, or if they are on government assistance or not. No one should be put in the position where they feel they have to defend their use of SM simply because you don’t understand their circumstances.
Remember, hopelessness breeds in isolation. SM helps us to feel ever so slightly less alone in this world.
Make sure to connect with me via social media. I want to connect with you!
@ 2017 spooniewarrior.com