Why I’m done with online support groups for chronic illness! #chronicillness #chronicblogs

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

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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.

DesignWhen 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.

Design

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)

Pros

  1. Gaining self-worth or a sense of purpose
  2. Feeling less lonely or isolated, especially for those who may not have access to face-to-face support groups
  3. Getting support in times of stress, depression or anxiety
  4. Being anonymous allows you to vent or discuss feelings openly and honestly
  5. Staying motivated to manage your physical illness or mental health
  6. Gaining control of or feeling hopeful for the future
  7. Raising awareness of invisible illnesses, disabilities or a specific disease
  8. Getting practical feedback about treatment options, benefits or worker’s rights
  9. Feeling empowered by supporting others or working successfully in a team
  10. Accessible when it suits you, even in your PJs, leading to more participation

Cons

  1. Peer to peer groups are probably be run by unqualified members, who are also unwell – vulnerable people supporting other vulnerable people
  2. Increased negativity due to constantly discussing aspects of your illness or disability
  3. Interference on posts with unhelpful comments or incorrect information
  4. Written communication means that inference or tone can be easily misjudged
  5. Participation online may compound isolation from other friends or family
  6. A lack of control over medical advice, quality of information or criticism of health care services/professionals
  7. Reinforcement of negative emotions and negative remarks to other participants
  8. Disruptive group members may dominate the conversation, cause tension or create interpersonal conflicts
  9. Comparisons of whose condition or experience is worse
  10. Possible use the environment to prey on vulnerable members

Design

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.

Chronic Illness BloggersReferences

Pain Doctor-Finding help online

Mayo Clinic guide to support groups 

Mental Health America-Finding online support groups

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5 thoughts on “Why I’m done with online support groups for chronic illness! #chronicillness #chronicblogs

  1. Interesting read! I’d been considering joining some online support groups so will take this into account (I was in one a while ago, but encountered some of the things you mention).
    ps. I frequently blog on chronic pain related topics you, you might like to check it out…

    Liked by 1 person

    1. I’m glad you enjoyed reading this piece. I hope you can find something out there that works for you. Many do, but I’d just be aware of what the general atmosphere is both in gaining access (are there rules to protect you?) and the posts once you’re in the group. Good luck! And I’ll check your page out-thx

      Like

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