Communities of Support

It's important to remember that there are online communities are much more than just being in a fandom. For many people, the only place that they can find people to relate their struggles is online. Online communities, help people to know that they aren't alone in what they're going through. This became apparent to me when I followed my friend, Maddy, on Tumblr and I began to see her posting things related to her chronic illness. I noticed that she reblogged encouragements and stories from others with chronic illnesses and interacted with them. While I had seen her go through dealing with this illness, as a healthy person I couldn't begin to truly understand or relate to her struggles with it, so seeing into this little community that I didn't know existed really struck a chord with me. Since I can't accurately describe what it's like, I decided to ask Maddy a few questions about her experiences with the community of people with chronic illnesses online.

 1. How long have you had a Tumblr?

I signed up on my 16 birthday after being pressured for a year by my friend. I had just started getting into Doctor Who so she said getting an account was mandatory.  

2. How long have you had POTS and can give you give a brief definition of the disease? I’ve had POTS for about five years now. I got it during my freshman year of high school as a result of some serious virus. POTS stands for Postural Orthostatic Tachycardia Syndrome (you can see why we have to shorten it) and it’s a form of Dysautonomia. So basically your nervous system has two parts: somatic and autonomic. Somatic controls your voluntary movements (like muscles) and autonomic controls…well pretty much everything else (heart rate, blood pressure, breathing, digestion etc). In POTS the your autonomic nervous system doesn’t work the way its supposed to which leads to a lot of problems. Here’s a link if you want to know more details: 

3. What's the difference between a chronic illness and just being sick?

Well as the name suggests chronic illness are chronic. They are long-term illness, meaning they can last from a couple of years to a lifetime. The difference between a chronic illness and just being sick is that you can get over being sick. With chronic illness you’re kind of stuck with it everyday. For people trying to understand what this is like imagine having a bad cold or flu, except it never goes away. Some people say the world chronic illness is the nice way of saying “incurable”, and it’s kind of true. With a lot of chronic illnesses all doctors can do is prescribe medicine to help with symptoms. You just kind of have to readjust your life to accommodate it.

4. Do you follow a lot of people on tumblr who have chronic illnesses? Do you think it's large community?

I think I follow mostly fandom blogs, but I do follow a handful of people who also have chronic illnesses. When I first found this community I thought there would only be a couple people. However my time on Tumblr has shown me it is much larger than I initially expected, probably in the hundreds.

5. How did you find this community? Were you surprised to find them or did you know it existed and sought it out?

I think one day I was having a hard time dealing with my illness and was curious if anyone on tumblr was going through something similar. So I typed in POTS to the tags search bar and lo and behold thousands of posts came up! I was so surprised and so happy to find them because I had felt alone in my struggle for a while. 

6. Do you feel like you're part of a community online of similar people?

Yes I do feel like I’m a part of this community. We are similar in our experiences, struggles, thoughts, as well as some other interests.

7. Do you know anyone irl that has the same illness as you?

No I don’t know anyone in real life who has POTS. I think it would be super cool if I did, but for now I’m happy with the online friends I’ve made. 

8. Has being online and finding others in similar situations as you helped you cope with daily life?

It really has helped me cope with a lot of things. If I’m having a bad day I can just go online and vent to people who I know will understand what I’m going through. There is definitely a comfort factor knowing you’re not alone. 

9. Are online communities (any kind) important?

In my opinion yes they are important. They bring people together and create a sort of family or support system that some might not have outside the Internet. They also serve as a great conduit/platform for ideas and creations. 

10. Do any other online communities define you, if so which ones?

On Tumblr I’m apart of a lot of fandoms for a whole bunch of TV shows (I couldn’t name them all even if I tried). The main ones are Supernatural, Doctor Who, Sherlock, and Merlin. I also consider myself a part of the Nerd Fighter and science online communities.

11. Do you think kids should be encouraged to find online communities to connect with?

As long kids are smart about it I do think they should be encouraged to find online communities to connect with. They are great ways to make connections with people who have similar interests. They are also good places to express yourself through whatever form. I think some kids feel isolated because the people around them don’t like the same things, think the same way, or are going through the same things etc. Online communities can fix that and give them a sort of family that they otherwise wouldn’t have access to. 

12. Any thing else you would like to say about the impact of having a community of ppl w/ chronic illness, or other communities, or something you think people should know?

This is probably going to sound cheesy but here it goes: If anyone reading this is going through something whether it be illness or something else I hope you realize you’re not alone. There are whole networks of people here on Tumblr and other places that you can access practically anywhere at any time. 

On another note I think everyone should read about something called the Spoon Theory. It’s a sort of analogy that explains what it’s like to live with a chronic illness.