The online support community. Oh my, what a wonderful place. A place where you can seek advice, reassurance and love from pretty much anywhere in the world by people who are suffering from the same condition or are in a similar situation.
Over the years of learning I have multiple chronic health conditions, I have turned to the online support community more and more, and have felt myself grow as a part of it. The amount of support and help I have received and the wonders if has done for is actually one of the main reasons I started Endo Bunny – I wanted to contribute and give pack to something that had been a huge help.
However, yesterday I experienced my first episode of trolling. Trolling is an internet-based term and is defined as “a deliberate act of making random, unsolicited and controversial comments on a social media or forum platform, often to provoke a knee-jerk reaction“. I received comments relating to my appearance in a photograph from a follower.
Now, the comments were not too nasty, but still it was completely unnecessary. Initially, I didn’t know whether it was supposed to be funny, you know, the kind of comment that was hard to interpret in a text, so I – against normal advise – replied and asked the person to explain what they meant. Then, when I realised it was a malicious comment, and was about to hit the “block” button when I received a reply.
A word of warning – not everyone will appear to be who they say they are online. The online environment is too easy a place to allow someone to create a false identity and hide behind a screen. For me, I discovered that this person was definitely not who they said they were. It was evident that they were quite young and their Instagram account did not have the typical content you’d expect from someone who supposedly had a chronic illness account. I totally get that is very judgmental of me, but here’s why I thought what I did – the reply I got was typed like a child, and the response included that the comment had come from this persons 2-year-old sibling. My husband and I could not fathom how a 2-year-old was able to write such a clear worded comment or use a very specific emoji. This person also had very few followers and the people that they followed were quite a collective bunch. Regardless of this (or their reasons) they were deleted and blocked. But I wanted to put this out there as a little warning – just be careful who is following your account and who can see your content. I have no idea how this person got into my “followers” list because my account is private and I “vet” who I approve to follow. But it was an easy mistake to make, and I had plenty of support from my followers when it occurred.
However, despite my experience, let me reassure you that the chronic illness community is 99% positive, loving and kind, so the 1% of people who try to ruin that are completely insignificant, and you should not worry about them. They should not prevent you from creating a blog, social media account or YouTube account – your voice will unmistakably rise above theirs.
The chronic illness community has inspired me in more ways than I could tell you – from creating my own website to posting brutally honest accounts of what living with these illnesses are like. It has encouraged me to be more open about what it’s like and take part in various campaigns to raise awareness worldwide. It is a fabulous community that I am so grateful to be a part of – no one judges you for what you’re feeling, doing or what treatment you’re having, and everyone reminds you to get in touch if you need them.
If you are thinking about becoming a part of this wonderful community, then I’ve listed the places below where you can find us;
- Social media – probably the most popular platform, there are all sorts of groups and accounts on Facebook, Instagram and Twitter. You can search all sorts of things to find what you’re after – conditions, treatments or charity groups. Hashtags will enable you to find multiple posts or places – try “chronic illness”, “invisible illness” or a particular treatment you want to know more about. Some Facebook groups are purely for information whereas others are for lots of discussion, and you will find multiple Instagram accounts that are individuals raising awareness through sharing there own lives (much like @endobunny!).
- Blogs and personal websites – similar to Endo Bunny, you can find a variety of blogs by doing simple Google searches or searching website-creating platforms like WordPress. Similarly to social media, you’ll find some websites are designed for sharing the most recent research and information, and others are a regular account of life or topics related to chronic illness.
- Forums – a forum is an online site where users can ask questions or share experiences that others can reply to or comment on. Common ones include Health Unlocked, which is an easy-to-use forum for all sorts of health concerns and is even linked to various charity pages, and The Mighty, another health forum which posts articles and videos and has a lot of content submitted by sufferers. Forums are a great way to get advice and information, and sometimes you won’t even need to ask the question as it’s likely there will be lots of content of one topic.
- Charity websites – most health conditions will have an associated charity. Take Endometriosis UK or Bladder Health UK for example – they provide all sorts of information and advice for suffers, employers and family members. Although it’s not related to being online, it’s possible that central charities will have local support groups to put you in touch with or an advice line available to call
If you are reading this, then I hope that the chronic illness community can be as amazing for you as they have been, and continue to be, for me. I am forever thankful for the people I have met along the way.
If you are unsure where to start of just want a bit of advice, feel free to get in touch or following my Instagram account.