If you’re living with an invisible illness or disability, particularly one that limits your ability to get out of the house, then the chances are that you’ve found one or more online support groups to join. I myself am a member of a few and have set up my own small, closed group for people that live with Chronic Migraine, although all spoonies are welcome.
Finding and connecting with people who have first hand experience of your condition online can be very beneficial (check out my Online Friendships post). It helps to lessen the terrible isolation that can be the result of chronic illness shrinking your physical world. But today I’d like to share my experiences & thoughts of online support groups, the kind that are set up by spoonies for spoonies and are often medical condition specific. In no particular order, here are some things I’ve noticed:
Culture matters – when I was a teacher, I spent a period of time between permanent roles doing supply teaching. I found it to be an excellent way of getting to know local schools before committing to one, as I did after a few months (I walked into one school for 3 days supply and stayed 6 years😊). My first concern when sizing up a school was the culture at work there; how do the staff speak to pupils around the building? How do the children respond to a new face at school? What was the atmosphere like in the playground and dining room? The answers to these questions told me how I would fit in to this school and I’ve found the same to be true of support groups. How do people ‘speak’ to each other? If new people post, does anyone respond? Which leads me on to…
Competitive spoonies – if you’ve been a member of a number of support groups, chances are you’ve come across at least one person like this. They are the ones who jump in at any and every opportunity to point out the ways in which they have it tougher than you. Sometimes they actively ignore the point of a post or request for advice to carve out such an opportunity. It can be VERY irritating. Even when we all have the same diagnosis, an illness can impact on people differently and to varying extents. Just because I am no longer able to work and am largely housebound, I don’t feel the need to belittle the hardships faced by someone who is still able to work. Competing with each other to earn the dubious titles of Most Disabled or Most Miserable is a total waste of our already limited energy and when I see it in support groups, it completely switches off my interest in being a member.
How are treatment options discussed? It can be really useful to hear first hand accounts of specific treatments, especially if we’re worried because they are invasive or in some way out of our comfort zone. We want to know about side effects and the practicalities and logistics involved as well as the impact the treatment had. But you know what we never need to hear? “That surgeon you’re seeing is a total butcher, don’t see him!” or “I had that treatment and it was the worst decision I’ve ever made in my life!! Didn’t help at all and everything is a million times worse now!” (These are real examples I’ve seen in support groups in response to a member asking if anyone else had had a specific surgery at a certain hospital).
I’ve had treatments/investigative procedures done that didn’t work or that went wrong, but there’s a way to communicate useful information without freaking out other spoonies, who are more likely than the general population to be struggling with depression and/or anxiety as it is. For example, there was one stage of my ICP/Pressure Bolt Monitoring when things went badly, causing me to scream with pain. Rather than terrifying someone who is looking for info and advice on the procedure (which is the most reliable way of getting important info on how the pressure inside head is behaving), I prefer to advise them to ask for sedatives and pain meds to be on hand before this stage of the process is attempted. Surely that’s more useful than “Oh my God, getting the monitor out of my skull was a nightmare!! I screamed the place down! Don’t let them do the monitoring on you!”
We’re all different – it’s not unusual for spoonies to have more than one diagnosis and we have all arrived at our current situation via our own unique journey. I think a good support group should be a space where we can share our experiences without judging each other. We (and indeed our individual specialists) may have different views on treatments, diagnostic criteria and pain management. Judging each other and bossing each other about isn’t really helpful to anyone.
Overall I think online support groups are a good thing and can be great sources of information and comfort. The key though is finding one that suits you and makes you feel better for having taken part, not worse. Remember that a lot of support groups tend to be frequented by those spoonies who are struggling the most; spoonies who are doing well as a result of treatments tend not to post so often, so don’t be overwhelmed and lose hope. Check out groups of different sizes and consider starting your own support group if you want to. I set up my own small closed group (Chronic Pain Cockney – Living with Daily Migraine) some time ago and while I’m not able to post as often as I’d like, it’s a supportive space for sharing articles and ideas on Chronic Life.
If you are not enjoying a particular group, leave it and don’t give it another thought. I have found that support groups set up by reputable charities are a good place to start if you’re looking for your first support group to join.
What do you think about online support groups? Do you find them helpful?
Wishing you good luck and happy days ,
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