In an age where the majority of people are willing to share their entire life story online, without a second thought about content (is it appropriate?) and audience (are they actually interested?) there is still one area of people’s lives that most seem unwilling to share freely – health. This is understandable. Medical details can be very personal and can make people a bit squeamish. But this culture often means that people suffering from chronic illness don’t talk about something that is a large element of their lives. Typically, this can lead to isolation and that person becoming withdrawn – they don’t want to bother people with something that can’t be dealt with.
When I got my preliminary diagnosis of suspected endometriosis, I didn’t tell any of my friends or family. I didn’t want to bother them, especially as I didn’t have a confirmed reason, and I’d been hiding or downplaying my pain to them for years. It’s also an illness relating to a topic that most people (men in particular) are rather uncomfortable around – periods. I’m incredibly lucky that one girl I worked with at the time, who I became really good friends with was also diagnosed with endometriosis around a similar time to me and we kind of became a little support system for each other. But it was still incredibly difficult and isolating feeling like there were only two people I could talk to about it.
Enter the online support community. A group of women from around the world who were all dealing with the same illness and could relate to my experiences. These groups have helped me to be more comfortable talking about my endometriosis with people who don’t have it and don’t know about it. I have become a lot more confident about it, and more knowledgeable, which in turn led me to restart my blog and speak more openly on this forum. There were times when the internet was like a lifeline for me, I followed endo specific instagram accounts, I joined online support groups on Facebook and I googled everything and anything. I definitely think that the online support community can be a valuable resource for anyone with a chronic illness, but you should be careful when using it.
I can divide my experiences with online support into two categories: online support groups (mainly through Facebook), and an online support community (through my endo instagram page). These may sound like two fairly similar resources, but I have found a significant difference between the two.
I’ll start with the online support groups. With these, I tend to stay as a spectator only, I don’t write posts, ask questions or comment on any posts because I have seen a not so nice side to these groups. They can be great resources in reminding you that although you may feel really lonely through your illness, you are not alone. It can also help you to realise what is “normal” for an illness and what requires extra medical attention. Many women in these groups also share helpful hints they have found to deal with pain and symptoms. However, there are some Facebook groups (who shall remain anonymous) where I have seen other members attacked for asking questions others deem “stupid” – as far as I’m concerned there’s absolutely no stupid questions when it comes to an illness like endo where there is really limited information. They have been severely criticised for their choice of doctor, and not in the good constructive criticism kind of way. There also seems to be an element of competition as to who has the worst deal, the worst pain, the most severe endo and general health. The way that these groups can come across is the exact opposite of what a support group should be.
The online support community, which I mainly see through instagram, is a completely different world. The women on these accounts support each other, no one deems a question too stupid to ask and there is a real feel of community about it. There are accounts of people who I have never met, and probably will never meet, but I am so invested in their story that I start to count them as a friend just because of this connection. I love how everyone shares their story, and that is respected by others within this community. And I also love how if you post about having a bad day, there are so many comments and messages of support that come in from all these lovely people. When posting about chronic illness on a personal instagram account, I find that you rarely get this kind of reaction. You get sympathy, and comments saying things like “feel better soon” etc, which are nice, but nothing beats the empathy and true understanding you receive if you post the exact same details within this online support community.
I don’t post to receive this empathy, I do it in an attempt to raise awareness and break down the stigma of talking about gynaecological conditions. I created this account because I felt I would annoy people on my personal accounts by posting about illness all the time, and it has to be one of the best things I’ve done.
This connection is a very powerful thing, and has the ability to help the most isolated person who is really struggling feel that bit less alone. When I’ve been struggling myself, I’ve found that this community, and the one formed between bloggers as well has become a real support system for me. And I will forever be grateful for it and the women who have made it the way it is.