centre of a storm

[Meic13]

so folks, how many of you feel you are like the centre of a storm, you are 'coping' or might even have found some calm, but all those around you are in stress, distress, panic or confusion?

[Newdawn Administrator]

As this touches on some potentially private thoughts and experiences Meic, you may find it advisable to restrict the post to the community. 

Regards,

Newdawn 

[Meic13]

methinks it might be a powerful approach to take, for now

[Newdawn Administrator]

Morning Meic, and hope today finds you well.

I'll attempt to answer your interesting question without including personally identifiable information.

Your question makes the assumption that we've all shared our diagnosis with family, friends and people around us but like Goshawk, I have chosen not to disclose beyond my husband and a couple of emotionally strong friends. If I'm honest I've chosen that course for quite self serving reasons though for some more vulnerable members of my family, it's a protection strategy for them and very necessary.

I have a deep interest and concern in how and why some people cope better than others with a cancer diagnosis because regardless of our personal resilience, it's a game changer. It's rattles the present and de-stabilises the future. From a personal point of view I think I've confronted the reality of it head on because that works for me and have adopted what has become recognised as 'adopting a participatory stance'. Research has shown that patients who respond in this manner have less emotional distress than patients who respond in a more passive manner or try to avoid their situation. However, please don't read that as unemotional because there are days I can be a total wreck! That's why I believe participatory forums such as this can really benefit people particularly if they don't have support networks around them. 

I see CLL as complex and outside of the traditional cancer pathways and frankly I don't really want to drag others along with me on that journey. And in truth I don't want them to see this as my defining feature or inherent weakness. My husband is a practical, pragmatic supporter whose strategy is to prevent irrationality swamping me. So whilst he supports brilliantly emotionally, he doesn't allow it to destabilise me and sap my resolve. 

I appreciate as time passes (I'm coming up to 4 years post diagnosis) and treatment looms, disclosure will be necessary and inevitable. But for now I'd rather contain my 'own storm'. It doesn't work for everyone and it isn't practical for many.

I'm sure some could even interpret this stoical approach as denial and minimisation from someone who is too used to being independent but I've considered that and feel I know when I need support. The community on here provide me with that invaluable service. There's times since diagnosis when I've been to 'hell in a handcart' but being able to converse with people who 'get it' rather than being immersed and personally affected by it really helps. 

How do you cope with and attempt to manage the maelstrom that your diagnosis seems to have created in your loved ones Meic. Perhaps your calmness causes them confusion because their perception is different and fears greater?

Best wishes,

Newdawn 

[virdieblue]

For me - I never considered not being open about my CLL. Part of it is that its easier, the other part is to be an example(?) of a person with CLL. Though people will ask me occasionally about my health, mostly they treat me as they always have. I hope for your loved ones, that the sight of you just being you will bring them comfort. 

[AussieNeil Administrator]

Hi Meic,

As Newdawn has mentioned, we will all feel far more prepared to share how we deal with what are quite personal matters if you make your post private.  Please read the community guidelines that explains the difference between private/locked and public/unlocked posts and in particular, section 8, which explains in detail how to edit your posts:

healthunlocked.com/cllsuppo...

If you have any difficulty, please reply here asking for an admin to make this change.

Thanks,

Neil

[Meic13]

oh well if this a a site to be bullied im off.

[Cammie in reply to Meic13]

Sorry but I don't understand the comment above?

Why would you feel bullied?

Both Newdawn and Neil have suggested that if you don't want your personal info and replies from others to be open to all that you simply limited your pistol to members of this community!

Am I missing something?

[Newdawn Administrator in reply to Meic13]

I think along with most members of this community, I feel very concerned when someone feels a response or responses is in any way bullying. 

You raised an important question Meic and in order to do it justice, it requires a degree of personal openness and detail which might lead to posters becoming publicly identifiable. Many of us feel that 'restricted to the community' should become the default position when submitting new posts but it isn't so we have to be careful to tick the 'no publicity box' when posting. Pointing out factually how that is done surely could never be seen as bullying? When posts are open to be viewed by all, it means 'ALL' and can become widely circulated on the Internet in their entirety. I'm sure you can appreciate that this possibility inhibits people in their responses because even if they are widely disclosed in terms of their CLL, there's private thoughts and feelings that we'd rather the neighbours and colleagues didn't accidentally stumble across!

There was no intention from what I can see to be heavy handed or bullying with you. Far from it, the instructions were helpfully posted to assist someone new to posting on here. Everyone's views, information, input and support needs are important on here and bullying is never tolerated in any form.

Best wishes,

Newdawn 

[Elizabetha in reply to Meic13]

Sorry that you feel this way I think that you may have misunderstood the comments about protecting your privacy.  Please don't be discouraged as this site is so supportive and the posters are concerned and want to help. 

[CLLCalifornia-USA]

For each and every person, we deal with things differently. There is no right or wrong feelings. For me, I'm a pretty open person. What you see is what you get. My friends and family have been very supportive and don't see me any differently as before. I think they handle it well because CLL doesn't define me. It's just another chapter in my life. Just know your feelings, whatever they may be are valid. Kindest regards, Sally