Online Support Group: I’m Breaking Up With You

Carly with Jack, one of only 16 people in the UK with the same condition as Carly. A perfect example of positive support.
Carly with Jack, one of only 16 people in the UK with the same condition as Carly. A perfect example of positive support.

Carly with Jack, one of only 16 people in the UK with the same condition as Carly. A perfect example of positive support.

Dear illness specific online support group:

I am breaking up with you. Calling things off. Walking out. Taking my records and changing my number. It’s not me it is you.

I have dabbled in the world of online support groups ever since the Internet became available, back in 1996. My school librarian thought a good way to spend my time while not participating in PE classes was to research my condition (Ichthyosis) on the Internet. Maybe contact some people who also have it. And so I did. It beat doing cross country runs. (Though I spent more time researching Savage Garden than researching Ichthyosis!)

At first it was interesting. I shared similar experiences with people. I was relieved there were others who could relate to me. And I have met some wonderful new friends – I have met several in person and keep in contact with others online – and I am thankful.

But then it got dark. I realised people haven’t been as lucky as I have been to have supportive parents and an education. There was resentment and non-acceptance. And I saw a competition about who has it worse. Sadly it’s the vocal minority that bring on the negativity. I see my illness as a blessing. It’s socially and medically hard but I’ve made it work for me. Others don’t feel it’s way. I think they believe I’m unrealistically positive.

I’ve had a certain member of the support group write to me ranting about how they haven’t had the life I have, and that’s somehow my fault.

I have had people assume I’m unable to work, because they are not able to.

I have had mothers dismiss my opinion or advice because, well, I’ve only been living with the condition all of my life.

I see a victim mentality, and negativity breeds negativity. There are can’ts and I give ups. There are limitations placed on the expectation of children when they grow up. There is too much woe is me.

I worry about sharing medical advice online. Just because it worked for one person, it doesn’t mean it will work for others.

I worry about sharing photos of children’s skin – photos of their infections and bodies – without their permission.

I worry about sharing too much negative information – there will be little hope instilled in young people with the illnesses, and their parents.

I understand the Internet is a good place to vent. I also understand that people cope differently. I understand that for some parents, and patients with the condition, the Internet is the first occasion they’ve ever encountered others with the condition, and want to drink up as much information as possible. And I understand how the Internet can support people with chronic illnesses and disabilities – I’ve even done my Masters thesis on it, and proven my hypothesis true . I must seem quite contradictory.

From my thesis:

“The internet can be a vehicle for support for people with chronic illness and disabilities. This concept is explored in a number of papers including Tan (2008), Fox (2008) and McGeehin-Heilferty (2009). Parr, H (2002, pp 73 – 95) writes about the increasing availability of health information on the internet and individual health consumerism. “Virtual space has also facilitated the formation of on-line communities, which are specifically focused around experiences of the physical body, experiences which sometimes contradict or contest dominant health discourses and knowledges. The growth of chat rooms, support groups, and specific information-exchange sites surrounding particular bodily conditions is phenomenal” (Parr, H 2002, p. 76). Parr (2002, p 77) also outlines the trend that “health and illness are now not confined to the clinical locations of the hospital or the GP surgery, or to the relationships between doctors and patients, but are dispersed throughout various social and commercial arenas” (Nettleton and Bunton, 1995 in Parr, H 2002).

Tan (2008) discusses the way people use Myspace blogs as a self therapy tool. One conclusion he makes is “MySpace blogging is certainly no replacement for traditional psychotherapy or psychoanalysis. This should not stop us, however, from constructing new understandings of the link between certain forms of human signification/expression (e.g. blogging) and potentially therapeutic or lifeaffirming effects”.

The rise of the term ‘e-patient’ is also discussed in papers; Fox (2008) discusses the way “internet users living with a disability or chronic disease are more likely than other internet users to be wide-ranging online health researchers and to report significant impacts from those searches”. While I do not regularly seek out treatment for my illness online, readers of my blog have found it because they were searching for information.

I choose to blog because it’s a passive way of taking part in the online illness community. From my thesis: While I write about my experiences with ichthyosis, it is not my motive to seek further information about treatments or others’ experiences. I am not actively seeking a place in the community of others with ichthyosis. However, my blog does enable internet users to consume information about ichthyosis, and so I have inadvertently become a member of that community.”

In order for me to be happy and healthy, I need to give up illness specific online support groups. They offer me no support. To be honest, when I close my browser window I feel judgemental and quite frustrated. I get medical support from my wonderful dermatology team and I get emotional support from family and friends. It’s not just me feeling this way – friends of mine with chronic illnesses and disabilities have hash the same experiences.

The support I receive from the online community – many of whom don’t have the same illness as me trumps the effects of the illness specific support group. I understand others may benefit, and I value the friendships I have made, but this support group is not for me. I much prefer one where people aren’t trying to compete, and I am so lucky to have belonged to one.

So it’s over. I’m calling it off between us. I’m better off without you. This is a break up for the best, and I shan’t be mourning.

No love,

Carly.

Sources:

McGeehin Heilferty, C (2009), ‘Toward a theory of online communication in illness: concept analysis of illness blogs’ in Journal of Advanced Nursing, Vol. 65, issue 7, pp. 1539 – 1547, July 2009.

Parr H (2002), ‘New body-geographies: the embodied spaces of health and medical information on the Internet’, Environment and Planning D: Society and Space 20(1) 73 – 95.

Tan, L (2008), ‘Psychotherapy 2.0: MySpace® Blogging as Self-therapy’, American Journal of Psychotherapy. New York: 2008. Vol. 62, Iss. 2; pg. 143, 21 pages.

Image and story about Jack

  • SSG

    I really enjoyed the perspective you gave us all in this post, Carly. So many people use online forums for support through illness whether it be acute or chronic, result in disability or not.

    I do agree with you about the potential for things to get very bleak and dark. It can feel awkward if you are one of the ‘fortunate’ ones to be able to move on either with or from the illness. Sometimes, it can feel as if you no longer belong.

    Thanks again and I really like the way you’re writing in a wide range of forums.

    SSG xxx

  • Debyl1

    Good on you Carly for doing what is best for you and not letting yourself be surrounded my negativity.It does creep in.
    I am so happy that you have found support from the online community.Im sure you have also given much support and hope with your wonderful positive blog.Not just for people with an illness but for people in general.Your great attitude to life can teach us all.
    I hope your journey keeps leading you to where you want to be.xx

  • Tara Latreille

    Well done. I think you are fabulous and even though I met you because you share a rare condition with my son, but to me, it certainly does not define you. You really struck a cord with me when you said that you worry about people posting pics of their childrens condition without their permission. I must say I 100% agree with you. While I know some want advise, others want sympathy. Yes, I said it. I have found some parents almost want/like the attention. I am very aware of not letting ichthyosis define my son. It just enhances the wonderful being he is and encourages more people to get to know him. Thank you Carly for your insight. I know that Myles will look to you for inspiration. I know I do.
    Cheers,
    Tara

  • Sonja van Woerkom

    In my experience, it’s definitely true that (as you say Carly) “negativity breeds negativity. There are can’ts and I give ups. There are limitations placed on the expectation of children when they grow up. There is too much woe is me.”

    While it wasn’t a support group as such, I used to be part of a group of girls who shared my experience with eating disorders. And I really loved it a first, because these girls understood me like no one else. Then one by one, they started to relapse. I noticed how hypocritical and hyper-critical we all were of and to each other. What had started as a kind of encouragement to recover had left me in potentially the worst space ever. So I “broke up” with them. I don’t engage with them in ED conversations. I support and find support from friends who really are trying to recover (as opposed to these others, who as far as I can guess are not.)

    The internet can be a great or horrible place.

  • http://www.jouljet.blogspot.com Tash

    Ha ha…taking your records and changing your number – love the Gotye reference!!
    This is such a strong and positive stance, Carly. Well done! A reasoned and well thought out post, and a properly “lived experience” perspective.
    I love that you gain more strength and support from the blogging community and contacts than the illness specific group – the power of blogging!
    Such a shame that your positive outlook is viewed so poorly, and your advise is not listened to. Any “recovery” from any condition (but I guess I am quoting mental health lit) is having a positive outlook, and seeking support for the journey.

  • http://Faybian-lifeothercatastrophes.blogspot.com Faybian

    When I found out I had a meningioma, I got given the number of an online support group. I did initially sign up, but a lot of the posts were depressing and I felt that if I got too involved it may end up helping me to feel sorry for myself, or too paranoid about my future. While I’m happy to talk about it because it is a big part of my life, it doesn’t define me and I aim to be here as long as possible, baby.