Guest post: Overcoming “battle fatigue” in an online support community

Linnea Dunn head shotAnother post from the Inspire.com network of patient commu­ni­ties. This one’s from New Hampshire resident Linnea Duff, an active Inspire participant who has Stage IV NSCLC (non-small-cell lung cancer). She blogs at Life And Breath.

It’s often been said that different people face cancer and the threat of death differently. Two years ago SPM co-founder Gilles Frydman expressed his concerns about the term “war on cancer.” Linnea’s post acknowledges that many people have that view, then expresses that she finds the metaphor apt, and tells, movingly, what keeps her going through the double challenge of being seriously ill while tenaciously helping others – which she says can lead to “battle fatigue.”

One big thing illustrated in this post is that real, authentic, therapeutic value is created in patient communities through something it’s hard to get from a chemist: empathy.

By Linnea Duff

When I decided to join a cancer online support community, I was already three years into my battle with lung cancer. I know some don’t like the use of military metaphors when discussing cancer, but I find them totally apt. Fighting the enemy (cancer), active duty, in the trenches – these words of war are all fitting descriptors for what we face every day.

And then there is the sense of camaraderie that we develop with our fellow “soldiers,” the intense bonding that happens when, together, you are fighting to survive.

Unfortunately, just as in an actual war, there are casualties.

One of the reasons it took me so long to join a support group is that I was afraid of caring for people only to lose them. Not only did it frighten me, but I wasn’t sure I could handle any more sadness in my life. An online support community seemed ‘safer’ in that respect, but in reality, I underestimated the strong emotional bonds that develop even in the anonymity of cyberspace.

The first time I lost someone from my group to whom I’d become very close, the grief was so difficult to handle that I wondered if It would be better for me to distance myself from lung cancer (as if that were even possible!) But then, my sadness was replaced with anger, and that fueled a determination to get right back in there and to fight in my close friend’s memory.

My own sense of battle fatigue was pretty profound a couple of months ago. I had lost so many comrades; I was in imminent danger of losing more, and once again I was facing progression of my own cancer.

It is tempting, for just a moment, to quit sometimes. Not just the online forum, but the whole difficult battle. I mourn for the seeming innocence of life before cancer.

And then I look at the fresh and open face of my 14-year-old son, and I know that quitting is not an option.

Which brings me to the “newbies” in my online support group. They are the real reason I keep coming back. As important as my established relationships are to me, I feel that I have the greatest opportunity to make an impact on someone’s life with those who are looking for information. That’s my forte, more than casual banter or an emotional boost, which so many other members shine at.

It is tough, what we patients and caregivers are doing in online support communities. But it is also important. Each one of us has the opportunity to positively impact another hurting soul, and in doing so, perhaps make our own lives more meaningful.

By being connected to so many of my fellow community members, my life has taken on more meaning and purpose. I have been able to help others who were in need, and I have been comforted in return. Had I not gotten lung cancer, I likely would have remained in my once smaller orbit. I hate this disease, but I cherish the way my heart and my horizons have expanded. And so, I keep coming here. And I plan on staying as long as I am able to.

Linnea Duff of Amherst, NH, is a married mother of three who has been battling NSCLC (stage IV) for over six years. She is an active member of the Inspire Lung Cancer Support Community, http://www.inspire.com/groups/lung-cancer-survivors and blogs at http://lifeandbreath.wordpress.com/. This column is an expansion on a recent post to her online community.


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Comments

13 Responses to “Guest post: Overcoming “battle fatigue” in an online support community”

  1. larry Seiberlich says:

    makes me wonder about my own anxiety level finding out I have prostrate cancer in the begining of the summer and up coming surgery on Oct 4th. Living by my self makes things difficult. But fighting for 6 years!!

    • Hi Larry –

      Have you found an online community of other patients like you?

      And btw, did your doctors discuss the range of treatment options with side effects of each? I don’t know a thing about your case, but a lot of non-emergency patients choose not to have surgery, but instead to keep an eye on things. (That’s the sort of thing people discuss in a patient community.)

      Again, I don’t know a thing about your case – I’m not recommending anything therapeutically – just asking if you’ve met others and explored options.

      Good to meet you –

    • tim says:

      I have it too, but prostrate means lying flat, prostate is the gland.

  2. Now, that is a wonderfully written powerful post. Yes, in the trenches. (I don’t have cancer) nor is my condition life threatening, but I relate on the long term battling part. I can imagine that the feelings must be much more profound when your life is at stake. I really admire the candor and the power expressed here.

    “Each one of us has the opportunity to positively impact another hurting soul, and in doing so, perhaps make our own lives more meaningful.” — that is what it is all about!

    • Thanks, Alex – sometimes people think it’s only about cancer – absolutely not!

      I’m going to post something today about chronic conditions – the U.N. group that’s working on the subject for some reason chose to only focus on 4 specific diagnoses, instead of the larger issue of living with constant challenges.

      Well, here it is, in advance of the post I’ll do. To comment use the “submit a rapid response” link in the left sidebar.

  3. What a treat, this afternoon my wife and I had a coffee with Linnea at a shop near us … what an articulate person, and an artist to boot! Here’s hoping we’ll hear more from her.

    (And stage IV schmage IV, she is nowhere NEAR done. Again, her blog is Life And Breath. Subscribe, at the bottom.)

  4. Elyn Jacobs says:

    Great post Linnea. Support groups really do benefit all…the give and take of support and information is invaluable.

    be well, elyn

    • Hi Elyn!

      In fact I hope the give and take of online communities is valuable. Some entities, like PatientsLikeMe and Inspire.com have an entire business model based on a specific valuation of what takes place in their respective communities.

      What I would say is that the value of these exchanges is MUCH HIGHER than what most people realize. And their real value has not yet been extracted.

  5. I’ve self-defined as a cancer warrior since my dx – really like this post because it recognizes the very human impulse for self-protection. People like Linnea give me hope, and I know that she gives buckets of hope to other people fighting in the cancer war.

    I found myself very turned off by several of the online cancer forums I engaged with in the weeks and months after my breast cancer dx, since there seemed to be a vocal minority percentage of posters who wanted everyone’s cancer experience to mirror and validate their own.

    As an e-patient, I welcome input and advice from those who’ve been-there-done-that. But I got beat up for asking what I thought were valid questions about standard treatment protocols, so I formed my own support group that saw me through treatment.

    Linnea, I salute your spirit, your savvy, and your heart. Keep kicking that troll’s butt.

    • Linnea says:

      Hey Casey, thanks for the feedback.

      I think there are too many people who think all cancers are created equally. Support groups are sometimes difficult places for me, because (despite my generally positive outlook) as someone with metatastic disease, A. I represent the very ‘thing’ so many fear (recurrence) and B. As I am constantly in treatment, I can’t put cancer behind me, and so don’t identify with statements like survivor (I’m surviving–active tense) or life after cancer; which is not possible for me.

      Hence, I tend to be a bit militant. But I don’t think anyone should ever get beat up for asking sincere questions. Keep on–and I wish you the best (gotta go kick some butt).

      Linnea

  6. […] ago a post I had written for my online support group  regarding battle fatigue was republished on e-patients.net. I concluded it on a strong […]

  7. Kathleen says:

    Linnea you are inspirational. Your courage shines through. Thank you for writing and may the love of the Universe comfort you and continue to inspire you. Keep up the good fight.

  8. It still baffles me that doctors don’t prescribe online support groups to their patients.

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