Laura is a former primary school teacher, blogger, poet and jeweller living in Sussex UK. She is a positive thinking, mum of 2 teenage boys and is happily married to Joel. Laura is an IIHer, chronic migraineur, patient advocate and mental health campaigner.
After developing a debilitating brain condition, IIH, in 2014; she sadly had to give up her 14½ year teaching career. Soon after being diagnosed, she turned her life long love of writing into this blog to document her journey with chronic illnesses. This evolved into raising awareness of disabilities, chronic illnesses and mental health.
Laura runs the Mission Migraine Twitter account, which raises awareness that migraine is much more than just a headache. Laura started her own business Paprika Jewellery & Accessories after starting to make jewellery as a distraction from the pain.
She writes poetry to explore her own mental health and well-being. Laura writes about positive thinking and living her best life, despite her conditions. She hopes to inspire others to find their own sense of purpose, whatever challenges they face.Continue reading About Laura→
✋ Hey there! You could really help me out. Just one minute of your time to press that share button helps me so much! You'll literally make me do a bed-bound happy dance. Now there's an image for you!
According to the ONS (Office for National Statistics), there are 149,000 young carers aged between 15 and 19 – about twice as many as in the 10-to-14 age range. [There are about 23,000 children under 9 who are carers].
There are about 50,000 Young Carers looking after someone with a Mental Health Condition in the UK. There are thought to be 3 in 5 Carers who have depression themselves, due to their role.
I aim to share the secrets that have guided our journey. They’re intended for younger families, caring for any family member, but are aimed at those with a teenage/young carer. I’m even sharing some free printables for you at the end of this post.
This advice is based on my experienced teacher viewpoint, but mostly that of a bed bound mum of 2 teenagers, who happen to be my Carers. It’s been tough, but we’re stronger than ever, as a family and individually, because we’ve worked at it!
As the teen years approached our family, I feared the worst; especially as I was now chronically ill with a debilitating brain disease. How wrong could I be? I absolutely love it. We’ve just adapted our parenting style by listening and responding to each other.
With strong foundations, that Joel and I had worked hard to build together, it wasn’t hard to tweak our interactions. As our boys grow into young men, at 13 and 15 and 6ft+, we’ve found we actually enjoy spending time together – I know, crazy right?
I’m incredibly proud of both of them for all that they achieve. Their teachers recognise their awesomeness and they amaze me with what they achieve, both in and out of school. That they’re able to do so well, with so much else to deal with, is exceptional.
But I’m not delusional! I know not everyone has this and our life isn’t perfect either (erm – teenagers and brain disease involved). However, we’re a happy and loving family with amazing relationships. They are my motivation to keep positive every day!
The secrets I want to share with you can be implemented into your family with just a little work. We are have our own parenting styles and there’s no right way. So it’s normal to go through phases of feeling like we’ve sussed it and others like we’ve fluffed it!
So even if you’re a nailed it with some to spare parent; a doing your best, fair and square parent; a making a mess, laid out bare parent; a higgledy piggledy, up in the air parent; a tearing out your hair parent or a feeling guilty you’re not there parent, these secrets could work for you.
What Does Caring Involve For Me
I have a PA (carer) every weekday lunchtime, from an agency providing consistent care. These are some of the things I need help with:
Waking up after sleeping all morning,
Make me lunch, normally a smoothie as nausea stops me enjoying food
Making sure I have accessible water
Helping me to get dressed as needed and getting out my clothes each day
Picking anything up I drop as I can’t bend down
Do chores I can’t such as laundry, emptying bins and making beds
Preparing meals or freezing food for another day
Organising my medications
Enabling me to be more involved with the boys e.g. supporting us bake cakes
If I’m well enough taking us out for a cuppa or to the shops
I have a great relationship with my carers and we always have a giggle. I need laughter in my day and they bring it! They’re also always there to listen.
The Impact Caring Can Have
Being a young carer can have a big impact on the things that are important to growing up
It can affect a young person’s health, social life and self-confidence.
Many young carers struggle to juggle their education and caring which can cause pressure and stress.
In a survey, 39% said that nobody in their school was aware of their caring role.
26% have been bullied at school because of their caring role.
1 in 20 miss school because of their caring role.
But young people can learn lots of useful skills by being a young carer.
When we realised what life was going to be like, Joel and I didn’t want the boys lives overshadowed by caring. We’re lucky enough to have PAs, so the boys don’t miss school, but it can be hard to make school aware of everything they carry with them.
Worry and anxiety have affected their mental well-being and both boys have had to learn how to cope with complex feelings. Life as a young carer is tough as we can see in these quotes.
Carers UK’s annual survey (2015) with over 5,000 carers across the UK revealed that 84% of carers feel more stressed, 78% feel more anxious and 55% reported that they suffered from depression as a result of their caring role, which was higher than findings in 2014.3
I’ll discuss how we manage teenage mental health in my 5 secrets below.
Being My Carer Every Day
The boys bring me breakfast and dinner make sure I have water and snacks every day. They know how to support me physically and sort anything Clumsy McClumsypants here drops or spills; like the glass of water in (yes IN) my bedside table this morning.
They need to know what to do if I press my life line and what to say to the Lifeline care team. They’d have to stop playing Xbox and may need to support or help me up if I fell. They may need to help calm me down if I was having a panic attack.
The boys have had to get used to another new cleaner being in their personal space and form bonds with my PAs. They’ve been carers for 4 years now, so are used to it, but there’s still restrictions, such as having to be quiet each morning while I sleep.
They told me the other day that their friends have to do more chores than them. My response was to ask if their friends have to make sure the house is secure and answer a doorbell every time theory mum drops something. I said I was clumsy, didn’t I?
Building a Team
How many kids would go to their parent and tell them they don’t do as many chores as their mates? This is just one example of how we’ve worked hard to build a family dynamic based on trust, honesty, empathy and care.
We’ve all had to learn coping skills and adapt as time goes on. The stress shows at home mostly, so it’s been important to use the same strategies around their behaviour. This has led to the strong relationship we have now.
As they’ve grown up and I’ve become a little bit more stable and aware, we’ve trusted them with more responsibility. We’ve just managed two nights with Joel went away for work. My Dad (who’s always stayed before) was just down the road if needed.
They wanted to cook tea unsupervised and probably not the tidying up afterward. They have to put the hens to bed, safely away from any foxy loxies and check Jasper Cat is in for the night. I had to be trust they would put the house to bed securely too.
They amazed me with how they coped with all this responsibility. There was no time to think about having house parties or sneaking out the house to meet up with a friend! (not that we’d know anything about ever doing that).
The way Joel and I choose to do this at the beginning, has shaped how we’ve handled the cards we’ve been dealt. Everyone chooses their own path, so I’m not making any comparisons. this is just my experience. Everyone’s path is unique, so follow yours.
But use my 5 secrets to help steer you. Firstly I just need to make it clear that we sought medical advice and were referred to social services for care and support. I’m not a health Care professional, so please ask for help if you need it.
Asking for help is the first step. Talk to your GP. Talk to school. Ask your kids how they’d like the help. You might need family therapy so do try it, if offered. If support given is not right for you, ask for an alternative. The skills we learnt, recognised and have since reinforced; have shaped our family’s daily lives. We learnt how to talk about our feelings, whilst being respectful. and to speak honestly, without breaking trust. I recommend organising a named teacher or pastoral care and make sure to keep them in the loop. This is individual to your needs, but be prepared to fight for this, as support is in high demand. Mental well-being for you all is key.
Let them be angry with the illness. Structure ways for your children to release this, safely. Help them understand that it’s the illness that’s changed everything. The whole family will grieve for life before chronic illness, so explore ways to cope with that. We used diaries, art therapy, music and a good old shout and swear session (oooh, controversial). We’ve found that music is a lifeline for every carer in the family. Being able to lose yourself in a distraction is a lifeline for carers and you!
Develop open dialogue with the Young Carers in your life and find ways that allow them to discuss what they’re feeling and experiencing without fear of backlash. The silver lining of being a bed bound mum, is having time for my boys to talk to me about their day or about something worrying them as soon as they get home.
Find time for everyone to set one goal at the start of each day. You could introduce Affirmations to reinforce positive thinking. See the end of the post for more details and free printables, available til 31st March 2019. Set a time to discuss at least 1 positive from their day. Create a regular time to air issues and reinforce positives.
Give yourself rewards! A really important part of feeling able to succeed, is by rewarding positive language and behaviour. The rewards can be for anything, big or small. Rewards can be verbal praise, but making time for a family reward is important to reinforce positive thinking. For example, you could go out for lunch, bake a cake together or watch a movie in bed. Let them choose most of the time, but it has to be agreed by everyone. The point is to reward the whole family regularly.
To adapt these for younger children
Involve school as soon as possible, both the class teacher and headteacher should know. School may offer extra support, which can be invaluable. Play and Art therapy is in short supply, so if you’re concerned speak to your GP!
Talk to them about what’s happening in a way they’ll understand. Help them express their feelings using puppets, library books and roleplay (Drs/patient).
Tell them why you’re going to hospital/in pain etc. They may know more than you expect, so let them lead. My rule is that if they’re asking about it, then they’re ready for answers. Just be prepared for a ‘why, but why’ session!
Ask them what they want to do that day on the way to school, you may even find out more than asking at the end of the day! Start a positives jar by everyone writing (for them if needed) ONE positive from their day. Set a regular time, to open the jar and read some. My favourite pulling out ‘cuddling with my Mummy’ on a bad day.
Make time for rewards, they don’t have to cost anything, just do things as a family.
A last word and some links!
I want to help others have positive experiences, even on tough days. So I’m sharing these secrets for you. Families are unique, though, so there’s no one size fits all. Take what you want from my 5 secrets, but remember these things are key:
Ask for help! Young Carers may have to do more at home than their friends, so schools should provide support and make allowances.
Make sure everyone truly understands and enable your kids to express how they feel. Create a safe environment and look out for signs that you may need to step in.
A great team relies on good communication which is honest, loyal and respectful, so be a good role model. Recognise small wins!Celebrate at least one good thing from your day.
If the life you want for your family seems a long way off or you’d like some reassurance you’re doing okay, then I hope this post has helped. Please ask me questions in the comments and tell me how you make life positive for young carers and your family.
Sign up for New & Exclusives – Help for Young Carers
Do you want to be the first to know what’s coming and get your hands on exclusive deals? I’ve created a set of PrintableAffirmations that would be perfect for setting the tone for a good day for Young Carers, as mentioned in Secret number 4 above. Grab a copy of this when you sign up to my occasionally regular newsletter today!
I don’t know about you but the beginning of the year is a busy brain season for me. I’ve been creating goals, working on new ideas and doing lots of training. My brain’s been on overdrive, with so much that I want to do this year! I’m going to share my own busy mind experiences with you and my top tips for clearing mind clutter.
I’m sharing my social media plan printable with you. It’s great for anyone who wants to limit time on social media, but I did create it with Chronic Bloggers in mind. If you want productivity over busyness, grab it at the end of this post ⬇️
My problem with plans, is that I want to just crack on and forget I’ve got brain disease! I’ve always had a passion for planning, but it doesn’t always go to plan. I go full-on Laura mode, with ideas taking over every tiny bit of headspace left I have left. The bits not backlogged with blood and CSF. Ewww, sorry for that image. Wondering what’s CSF? ➡️ What is Idiopathic Intracranial Hypertension/IIH?
I’ve not planned properly, since having left teaching, but this year I got busy creating planning grids for my blog, email and business strategies. I hadn’t planned to make them, which messed up my plans. 🤔 I was trying to do it all, forgetting to review and adapt and I gave that anxiety monster a VIP pass! As I practise grounding strategies often, I was able to calm my busy mind quickly and worked on strategies for organising my thoughts.
Write things down to make sense of your thoughts
If your brain’s overworked, get a pen and some paper and write your thoughts down. I don’t think ‘to do’ lists, are a productive way to form clear ideas from jumbled thoughts. They’re great for quick reminders, but not so great for bigger issues. So what could you use instead? Here are my top tips for creating clarity in a busy mind.
I normally use a diary but this year I decided to try a more structured planner. Structure is important for focusing your thoughts, whichever format is for you.
It has a yearly and monthly calendar for planning ahead ✅
it has a space for me to write my goals ✅ (I want those everywhere)
It has a monthly page of squares for bullet journaling, so I can test the idea ✅
It has space to plan, reflect and add your most important jobs ✅
Most of all it’s really pretty and I can add stickers and washi tape ✅
You can see where I’ve rubbed out where I’ve planned too much here. No filter…
At the end of each day I always write 3 positive things which happened that day. There’s not quite enough space in the planner. So I’m using a gorgeous diary covered in recycled vintage Korean fabric from my friend’s lovely Etsy shop – The Vintage Bookworm. I write:
I’m Happy because…
I’m Grateful for…
I’m Proud of…
It’s so important to reflect on each day, each week, each month and each year to have a success with positive mindset! Take time to celebrate your successes, big or small. Reward yourself with a pamper, a bubble bath or just a pat on the back. These rewards trigger the pleasure centres of our brain and make us want more positivity.
An Overloaded Mind
When things get too much and start to become a mess in my head, I create head space by getting my ideas down on paper or notes on my phone. I’ve been creating structure so I can be productive and focused. I’ve made a social media plan a free printable for you ⬇️
My anxiety is usually from having an overloaded mind and this still gets the better of me sometimes. Structuring my thoughts and writing them down always calms my mind. I’m sharing the strategies I’ve built up over time with you and some I found on these sites;
Top Tips for Creating Clarity in a Busy Mind in just 15 Minutes
When One Big Problem is Bothering You
Set a 15 minute timer and free write – This is a cathartic activity and works best with a real pen and paper so that you can let your thoughts spill onto the paper; clearing your mind clutter. If you avoid doing this your problem will get just bigger in your head. If you write it down, it may not seem as big a problem as you thought!
Speak to someone you trust – Find someone you know is a good listener, such as your partner or good friend. Set ground rules before you start and be clear that you’ll only spend 15 minutes talking about this. Going over and over the problem will create more negativity and isn’t good for your headspace. Say it, listen and move on.
Act on your negative feelings, before it becomes a problem – Are you feeling Stressed, Nervous, Frustrated or Anxious? Set a 10 minute timer and use this feeling to turn the problem into a question – e.g. Why am I anxious about going to the doctors? Then quickly list the reasons that come up. Write your answer down using positive language i.e ‘I can stop feeling anxious by writing my questions’.
Be solution focused
Using a 3 minute egg timer – write down your problem. You can create a mind map or flow chart if visuals help you.
Turn over the timer – write down your negative feelings about this problem. You may have many or just one. Write them as one main sentence about why you feel that way e.g. I feel really nervous about this job interview.
Turn over the timer – write down what’s stopping you solve this e.g. I’m nervous because last time I forgot to say…! Be specific and don’t make assumptions.
Turn over the timer – think about your ideal solution or a 1st step. Write this down e.g. I’m going to make notes on flash cards so I remember to say…
Some problems will need more than 15 minutes to solve completely, but these strategies can be adapted. If you ignore these big problems they’ll start to affect your health.
How to Cope with an Overactive Mind in 15 Minutes
Exercise daily – Daily you say? Yes, daily! I don’t mean a full on work out, we’re talking about 15 minutes here! You could: Take a 15 minute walk round the park, do 15 minutes of reps/sit ups etc or try a 15 minute morning yoga stretch. Exercise helps clear your mind and releases serotonin, which makes you feel good! Even from bed I do bed yoga (Yep, it’s a thing) most days. *Please make sure to check with you Doctor before starting any new exercise routine.
Set a daily worry/thinking time – This one might sound strange, but you can retrain your brain by setting a regular time to sit quietly for 15 minutes and let those thoughts free. This only works if you’re able to distract yourself the rest of the day as we don’t want to lose you down that rabbit hole before you get to that time.
Carry a little notebook and Pen – This one might seem obvious, but it’s a must. I tend to use my phone’s notes, it just needs to be portable. Offload your thoughts quickly before they get too heavy. If you’re a night worrier then keep one next to your bed too. Just set a timer for 15 minutes.
Meditate regularly – Many of us struggle to fit this into our lives or think it’s too hard. I’ve used meditation daily since becoming ill as it’s known for creating calm. At first work on controlling your breathing and let your thoughts come to mind. Then let them go by focusing back on your breathing. A guided meditation will talk you through this process and there are loads available for free on YouTube or apps, such as Insight Timer. This is one of the top 5 things that help me stay positive. I’ve written more on this here. These are both great guided meditations for beginners.
Turn negatives into a positives – Set a 15 minute timer and grab a piece of paper. Draw a vertical line half way and write everything busying your mind. Then look at each one separately and try to turn it into a positive statement. E.g I’m not sleeping well, I’m so tired | I will go to bed early and sleep will happen. This redirects your thoughts and establishes positive language, which helps you to remain focused and find solutions quickly.
Use Affirmations for daily positive thoughts – I use these to focus on the big dreams, I dare to dream. They help keep me positive even on the worst days when pain and/or anxiety are off the charts! Affirmations are positive statements or intentions that tell your brain___ is totally going to happen! Using these daily can help you become who you dream of being! I’ve used them successfully for three brain and skull surgeries 😵. If you still want to be rid of negativity, I can help. I’ve created a set of affirmations for my Etsy shop and you can get your hands on a free sample today. See details below ⬇️
Use a strategy to reduce the time you spend on Social Media – Let’s face it, we can’t get away from social media and as a blogger you need it. I take a total break or limit the number of sites I’m on when I need to rest. I recommend using an app to schedule your content ahead. You can be more productive by planning in bulk so that you can focus on engagement for 15 minutes before you post. If this is your style then please download my free social media planner printable below ⬇️. I created it for Chronic Illness bloggers, but it can be adapted for anyone.
Please take away the most important message from this – You need to write your thoughts down to make sense of what you’re stewing over. Set up regular habits to kickstart a cycle of positive thinking, reflection and reward. It’s really worth taking 15 minutes to convert your thoughts into beautiful ideas or solutions and it’s just as important to look after your brain as the rest of your body! Try out some of these ideas to find what works for you!
I’d love to hear from you if you try any of these out or want to share ideas that help you. Sharing is caring and with mental health, we need to keep an ongoing conversation!
Before you go…
My Etsy shop The Paprika Jewellery aims to support positive thinking by creating designs from positive themes. Jewellery & Accessories made from the soul, for the soul.
Want to be the first to know what’s coming and get your hands on exclusive deals?Grab a 15% coupon code for your next purchase in my Etsy shop and a free printable sample of my ‘Positive Affirmations’ by signing up to my occasionally regular newsletter today!
It’s been a tough ten days in my chronic illness warrior body, so I wanted to share with you some of the things I’ve been feeling – eek, it’s time to get real peeps!
I’m going to reflect briefly on what’s been happening to my body and mind each day. But hey, remember this is me writing so, even though I’ll be totally honest, I’ll make sure there’s a positive to everything! This is the story of my Date with Anxiety.
I keep a diary (not a journal) and use it to pace my daily activities. Randomly through the year I write little notes of my strengths and personalised affirmations. Then in the evening I write 3 positives from that day.
Friday 7th December
I couldn’t sleep last night, it’s been disrupted all week, but this was next level. The pain was intense and relentless and I couldn’t understand why. A friend visited me yesterday, which had made my day. She never stays too long and spotted when I was flagging. I hadn’t napped either so I expected knock on effects, but why was it SO bad?
At 3:30am my heart started racing and I was breathless and dizzy – losing control. This panic attack came out of nowhere!. I got up to use the en-suite and collapsed, but my amazing husband Joel woke immediately and rushed to my side. Then he hugged me tight, that hug that let’s me know I’m not alone!
I ended up taking a strong dose of diazepam, but I still didn’t get much sleep and when my carer arrived at lunchtime I was stressed, overwhelmed and exhausted. She took such good care of me and was extra gentle, seeing me so poorly. I recognised at the end of the day that I’m a very lucky lady to have such wonderful souls looking after me!
Saturday 8th December
Hardly any sleep again last night! The meditation and breathing techniques I normally use didn’t help and the day was littered with panic attacks, feeling like I couldn’t breathe. I was on full anxiety alert. Thankfully Joel was amazing with me through it all again and encouraged me to go downstairs for a change of scene.
Before going down I had a shower which was an accomplishment in itself. I still had panic rush up on me again and I just wanted to run away! But Joel guided me through it all, holding my hand I calmed down. Eventually, drained and emotional, I managed a 10 minute nap watching TV, on Saturday evening and finally got some relief.
I’ve not had a flare like this in years!
Sunday 9th December
I’ve managed to sleep much better at last, but I feel battered and bruised from the state of alert my body’s been in the last few days. I know my brain has had the acute stress response or fight or flight. This is exhausting as despite having a large toolkit for dealing with stress, I’ve struggled to access these strategies whilst in a state!
I’m being kind to myself today and have prioritised getting downstairs to be around my boys, so that they can make me laugh and help me heal. The mental bruises take just as long, if not longer than physical to heal, but I’m slowly building myself back up.
I’m still feeling fragile today, but at last my body has decided to catch up on some of the lost sleep. I’ve cat-napped all day, with a little break at lunchtime when my carer arrived. I have no idea what we were talking about but we were cackling away! Joel was working downstairs (a little cushion for me – knowing he’s around even if he’s busy) and commented on the cackling as soon as he did pop upstairs!
Now that I’m trying to process my feelings, I was brave and decided to write a poem about the feelings I experienced. It’s important to reflect on any kind of anxiety attack however you do it, but sweeping it under the carpet won’t help you in the future!
Tuesday 11th December
I finished the poem this morning when I woke up early. Most of my poems are at least started when I’m either not getting to sleep or waking early. This was an early morning finish! I love creating the poem on a lovely background, using stock photography, which is perfect for sharing on social media. I loved the reaction this poem received!
I also chose to explain a little about what I’d been exploring when I wrote this poem. However, I’m not yet used to being so open about my own mental health whilst I’m still fragile. But I’m committed to raising awareness and always think about the fact that what I write might help just one person!
I talk about my anxiety levels rising as the lack of sleep and increased pain added up. But although I’m drained, I do have a strong mental health toolkit – full of strategies that I practice regularly. I know how to use these help build myself back up. Knowing that I’m my only priority in this instance is key to bouncing back!
Well, I thought that I’d got my groove back as the week went on but I’ve struggled again the last few nights, especially last night when I managed about 90 minutes all night. Thankfully I dozed all morning, catching up a bit on all that lost sleep from pain. However, I’ve managed to keep the anxiety in a box by using my toolkit. See below…
No mental health blog is complete without a few top tips.
If you or someone you know suffers a panic attack, try these tips!
Exercise is one of the quickest way to deal with the raised stress levels that come with a panic attack. My physical illness stops me from going for a run (think flight…), but I can do some bed yoga, even though I take it even more carefully than normal! Some good stretches and shoulder rolls are a great way to shake it off!
Talking through the experience
A panic attack is our body’s way of telling us we’re in danger. It’s unlikely you’re in any danger, but tight chests and trouble breathing are all primal reactions to danger. This can trick the mind, almost like a tripwire. So rationalise and talk your physical feelings through with someone. The more you practice, the sooner you’ll interrupt the signals between the brain and the body and if you do this when you’re not in the acute stage, the quicker your training will kick in when you do feel anxious or panicky.
Laugh, Smile and spend time with your loved ones!
What can make the stress disappear more than having fun with your friends and family. Make time for each other, put down your phones and other technology and talk. You’ll notice how often I talk about being with Joel and my boys. They make me laugh out loud every day and the feeling is mutual. It’s one of the strongest things we have as a team and we are definitely the reason for all of us usually coping so well!
Relaxation and Mindfulness
I talk about meditation and mindfulness in most of my blogs because they are the easiest ways to relax. You can train your brain to take it slowly and/or meditate daily so it calms and controls your breathing. Then you automatically have these skills to help you relax during an anxiety attack. Body Scan Guided Meditations are ideal (search YouTube) and I are some of the easiest meditations to start with. You may find that something else relaxes you, such as taking time to be present or sitting in nature.
I hope that this sneak peek into my world has helped give you an insight into panic attacks and how they can come about. I have let you in to these thoughts because I believe that mental health is as debilitating as physical health can be. They are also often intertwined and life can be tough and lonely if you keep it all inside. I feel very strongly that sharing my experiences is vital to ending the stigma that surrounds mental health. I only discuss this to raise awareness, I’m not seeking sympathy!
If there’s one thing you have learnt from my Date with Anxiety or one thing that you can take away to help yourself or your loved ones, then please let me know in the comments. I’d love to hear from you.
**AND if you’re not affected directly, then please remember that you never know what someone is going through, so please take the time to listen and talk to each other!
I’ve referenced these websites and blogs whilst writing this post:
If you follow my blog you’ll know that I’ve been very active in a variety of support groups since becoming chronically ill in 2014.
So why the change of heart?
In nearly every group I’ve joined, there’s been a culture of drama and/or negativity. I love to support others, but my health was suffering by getting too involved and I realised that I was done with being an active group member. I have left most groups, so I want to explore online support groups and share my experiences.
What is a support group?
A face to face or online community open to anyone, but often focused on specific topics i.e. mental health or pain conditions
Led by a professional facilitator, such as a nurse or counsellor, or by group members/founders
A comfortable space where individuals come together to share their stories, experiences, feelings, coping strategies and information.
A way to help reduce isolation and loneliness by realising that there are others dealing with similar situations.
A bridge between medical support and self-help
Why I joined online support groups
Rewind to when I first fell ill. I was isolated and lonely as friends began disappearing from my life. I was struggling to understand my illness and my mental health was suffering. When I joined an online support group, I realised I wasn’t the only one with my diagnosis, which helped my mental state. However, the negativity in the group exacerbated worries about my future. I decided this wasn’t the group for me.
So, I joined an open group called Mission Migraine. It was full of amazing women and had a positive vibe, yet we all supported each other. What I loved most, was the we shared our own stories to raise awareness and challenge misconceptions. I was proud of what we were doing, so I started the Twitter account @migrainemission to continue raising awareness. Sadly, the Facebook group is no longer running.
Finding the right fit
I knew that Migraine wasn’t the full picture, so I explored a variety of groups to help me understand what was happening. I connected with other people with similar symptoms to my own, in well led groups. I was able to access information to help me research possible causes of my symptoms. In one group, I read about a consultant in Cambridge, specialising in Pulsatille Tinnitus. This was a pivotal moment in my journey! If you don’t know my story, then you can read it here.
When I was initially diagnosed with a rare brain disease, Idiopathic Intracranial Hypertension (IIH), I joined IIH support groups, which helped me find information and reassurance. Soon I became overwhelmed by the number of Facebook groups I was in, so had to decide which of these were right for me. I left those that weren’t. I’d found more friends who totally understood my pain!
When it no longer does what it says on the tin
In most groups I joined, I’d encourage positivity and try to raise confidence levels. I’d post inspirational quotes, share knowledge and helped other’s learn to celebrate the smallest achievements. Helping others gave me a sense of purpose and achievement.
But I couldn’t get away from the drama.
Members of support groups are vulnerable, with many suffering with unrelenting pain, crippling anxiety, financial or family worries. This creates a breeding ground for negativity and arguments. If this disruptive behaviour isn’t dealt with effectively, then the group is no longer able to support it’s members and is not fit for purpose.
As an empath, I’m susceptible to getting too involved. I gave so much, but my physical and mental health were suffering. What I was getting out of these groups now? I’d had enough of group politics and feeling responsible for near strangers. I worried I’d lose friendships, but when I did leave I was flooded with relief. And of course, my true friends have stuck by me.
Would you benefit from an online support group?
I may find a group that’s right for me again one day, but next time I’ll do my research first. Here’s a list created from personal experience and research. (See below)
Gaining self-worth or a sense of purpose
Feeling less lonely or isolated, especially for those who may not have access to face-to-face support groups
Getting support in times of stress, depression or anxiety
Being anonymous allows you to vent or discuss feelings openly and honestly
Staying motivated to manage your physical illness or mental health
Gaining control of or feeling hopeful for the future
Raising awareness of invisible illnesses, disabilities or a specific disease
Getting practical feedback about treatment options, benefits or worker’s rights
Feeling empowered by supporting others or working successfully in a team
Accessible when it suits you, even in your PJs, leading to more participation
Peer to peer groups are probably be run by unqualified members, who are also unwell – vulnerable people supporting other vulnerable people
Increased negativity due to constantly discussing aspects of your illness or disability
Interference on posts with unhelpful comments or incorrect information
Written communication means that inference or tone can be easily misjudged
Participation online may compound isolation from other friends or family
A lack of control over medical advice, quality of information or criticism of health care services/professionals
Reinforcement of negative emotions and negative remarks to other participants
Disruptive group members may dominate the conversation, cause tension or create interpersonal conflicts
Comparisons of whose condition or experience is worse
Possible use the environment to prey on vulnerable members
What is needed to create a good social support network?
Those running the group must be very clear about what support is available and when.
Clear rules covering: disruptive behaviour, sharing medical advice and discussing medical professionals.
Conflict needs to be handled professionally.
A positive environment, that’s nurtured and monitored so that people feel listened to and that other members will show empathy and be supportive.
Do online support groups work?
The disadvantages of online support groups are discussed by authors and healthcare professionals. Concerns about the quality of information, criticism of health care services/professionals and reinforcement of negative behaviours are certainly valid. However, this study. of online groups for those with physical illnesses, found that concerns about the risks of online support groups are not always justified.
In my opinion, there is increased risk in online peer-to-peer support groups, as those facilitating the group may be vulnerable due to their own physical or mental illness. This may make it more challenging to nurture a positive and safe space.
When looking for online support, it’s recommended that you ask questions before joining a group to find the right fit for you. If you don’t feel comfortable or safe in a group, put your own health first and take action. Online support groups aren’t for everyone, but remember that they aren’t the only option.
Finding my own way
I have my own network of friends online. We give mutual support through physical and mental illness. I also work 1:1 with a trained professional, via online video conferencing, to support my mental health. I wouldn’t have all of this support, without having been in the groups. I also have an amazing network of friends and family, who have shown that they’ll stick by me through thick and thin. I know how lucky I am to have that and I’m the happiest I’ve been in 4 years of chronic illness. I don’t know about the future, but for now; I’m done with online support groups.