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Finding real support in the online epilepsy community

Hayley’s Story

I’ve chosen to write about my experience with support communities to hopefully help people who are newly diagnosed with epilepsy.  Alternatively, for those who don’t use them already I hope this will help you understand more about what these groups can offer, how they can be accessed and also, how to avoid any pitfalls.

Firstly, I think that in these times of a non-contact society, using online (and telephonic) support while you negotiate your own (or someone that you care for) journey with epilepsy has taken on an extra dimension of necessity. Many of us have experienced cancellation of face to face hospital appointments or limited access to everyday medical support and so, if you have been thrust unwittingly into the digital world to manage the medical element of your epilepsy, now is a great time to see what else is out there in terms of support from the wider epilepsy community.

NGOs and Nonprofits

The first “tier” (because we know everyone loves a tier, yawn!) of these are the official charities and organisations. In Britain, we have the Epilepsy Society and Epilepsy Action, both charities which provide excellent resources in terms of fundraising, research and offering contact with trained advisors who can talk to you about challenges you might be facing related to epilepsy. These include helping you understand how to access practical support (what accommodations the UK government makes to make life easier for people with epilepsy for example or how to make your home safer), offering a friendly ear if you are struggling with your mental health and, although they can’t offer medical advice, they can point you in the right direction of those who can.

Online Resources

Organisations like Living Well with Epilepsy can also share information, articles from medical professionals and bloggers. These platforms are regulated and reliable, so you can use them safe in the knowledge that what you find is factually correct. They are a great starting point for learning more about epilepsy and separating fact from fiction. Their only disadvantage is they aren’t “personal”, so you might not be able to find anything to help deal with your specific predicament.

Social media support groups

The next element of the epilepsy support network I’d like to talk about is social media groups. There are a HUGE range of these across pretty much every platform and they cater for every element of epilepsy you can think of. In this sense they are great because you can reach out to people who know what you are going through because they are living it. They will understand in a way that the people living around you and even the most qualified neurologist out there will not. You can narrow your choices by field; type of epilepsy, gender (this isn’t as discriminatory as it might sound, lots of women suffer from epilepsy which is specific to their hormonal cycle so it make sense so have groups just for them…..there may also be groups just for men as well, I haven’t personally looked), specific activities and how epilepsy impacts them e.g. sport or employment. You can also join groups to share experiences with other parents of children with epilepsy if this is your specific need.

I am a regular user of epilepsy social media pages. I use some for advice and support and some just for fun; for example I follow a lady on Twitter called @EpilepticRuner (RunAngieRun) who blows my mind. I found her when I was looking for advice about building stamina whilst taking anti-epileptic medication because I wanted to start running again and was finding it hard going. It terms of what she does there wasn’t really much that was relatable to me (she regularly runs 100km+ ultra-marathons despite having uncontrolled seizures and being on a big cocktail of medication) whereas I still haven’t made it back past a very sedately paced 10km (I used to be a reasonably good distance runner) and so I don’t draw inspiration from her as such, but I still like to see what she’s up to and what challenge she has set herself to complete next. Her own personal dedication is next level!

Getting past the motivational quotes

When you’re feeling low (which is an inevitable part of dealing with epilepsy) social media groups are a great place for instant sympathy. I personally HATE the vast majority of motivational quotes but I know they help lots of people and occasionally one will pop up which will resonate with me, Instagram is awash with this kind of quick “pop in and get a virtual hug” type of support. The groups available via Facebook are more specific and as long as you can turn a polite blind eye to the “thoughts and prayers” which are always on offer if they aren’t your cup of tea, if you want to share your experiences in a closed forum these groups do act as free therapy, especially as there isn’t really much in the real world in terms of support for those suffering with long term medical conditions (same issue as previously mentioned, you can be the best psychotherapist in the world but until you’ve lived it, there are limits as to how well you can empathise with it). The people are usually nice, the groups are usually well moderated and perhaps most importantly they are easily accessible, so if you are bed/sofa bound and feeling sad and sore because you’re recovering from a tonic clonic or medication side effects you can still find someone to talk to.

Why social media groups are great, but not perfect

I do however feel like I would be irresponsible to advertise these groups without explaining why they aren’t perfect, especially for people who are going through diagnosis or are new to epilepsy. It really and truly is almost like a whole set of cyber-safety rules should exist for medical support groups.

1. They’re global

Firstly, they are often global, which is great for always having someone available but, medical services, medications, laws regarding issues like driving and benefits and alternative therapies vary massively from one country, state and continent to the next so it is very important to understand that whilst someone can give you advice, it doesn’t necessarily meant the same thing will be applicable where you live. Take heed.

2. Everyone’s experience is different

Secondly, everyone’s experience with epilepsy is different, and whilst it can feel amazing to find someone who shares the same symptoms and has been prescribed the same medication as you (trust me, it really does feel unbelievable to find these people in your darkest hours when you feel totally lost and confused) you HAVE to keep this in perspective. It is a condition which can take random twists and turns at any point for no discernible reason and therefore you can easily set yourself up for a fall if you find a “kindred spirit” only to find out they are being weaned off medication in six months time or a candidate for the surgery you’ve begged for but been refused. I can also not stress strongly enough how important it is that you must NEVER take medical advice from any online social media platform. We might all share experiences and in some cases run professional epilepsy organisations but we are NOT trained neurologists and advice regarding medication and treatment should only come from YOUR doctor or nurse.

3. Some topics can be scary

Lastly, by nature, some of the topics are scary, and if you are feeling vulnerable, epilepsy social media forums aren’t always the best place to be. It’s very important that the profile of SUDEP (Sudden Unexpected Death in Epilepsy) is raised and if you or your loved one has epilepsy you SHOULD talk about your own risk factors with your medical practitioner but I fully appreciate if you just popped on to talk about period pain having your own mortality discussed is truly terrifying.

4. Boundaries are good

People WILL also want to talk about their mental health and depression and anxiety, and sometimes by nature shared experiences can bring you down instead of up….all it takes is for you to be in the wrong mindset and a few people discussing their depression when you perceive their lot to be better than yours can send you on a downward spiral. In these instances I would advise, don’t leave the groups but do take a break, come away from social media and do something grounding and gentle. Learn to recognise when things are making you feel good and when they aren’t, know what you need to do to remove yourself from the situation. This is of course a huge advantage of online contact, I know it is addictive but it’s also not a physical room you are stuck in, you can just walk away at any time.

Remembering you are not alone

Despite all these things which you should be aware of, I am a firm advocate of the online epilepsy community and I think it is definitely the best place to go to help normalise what you are going through. I can’t promise it’s the right path for everyone but in these, often lonely times I would recommend you try it, and experiment for find what works for you. My own condition is currently not fully controlled but it is stable and I am still a regular visitor. It’s nice to be in the position to be able to “pay it forward” and help others who are beginning their journey, offer reassurance and to share in other people’s victories, no matter how small. It’s not a community any of us chose to be in, but since we are all stuck with it, there isn’t any need for it to be a storm you weather alone.

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