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Chronic Illness Group


Guest tearose
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Guest tearose

I'm going to help get a group off the ground!

Somewhere in-between living with chronic illness and not sharing, and sharing only with a therapist is where some people live.

I know people with POTS, Lupus, MS...who like me, share the need to air some of our issues and bounce them around with others trying to live in balance. There just aren't enough people with only POTS to do a group.

I think having a medical person come to visit would be great because of what you folks have shared about the benefits of your experiences with a therapist. So too, other guest speakers will benefit our discussions.

I would love to hear what other support groups are doing and I will keep you posted as things progress.

best regards,

tearose

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I wonder whether it would be possible to do a dysautonomia support group? it seems like there would be enough people...

I'm going to help get a group off the ground!

Somewhere in-between living with chronic illness and not sharing, and sharing only with a therapist is where some people live.

I know people with POTS, Lupus, MS...who like me, share the need to air some of our issues and bounce them around with others trying to live in balance. There just aren't enough people with only POTS to do a group.

I think having a medical person come to visit would be great because of what you folks have shared about the benefits of your experiences with a therapist. So too, other guest speakers will benefit our discussions.

I would love to hear what other support groups are doing and I will keep you posted as things progress.

best regards,

tearose

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good for you tearose!!!

this is what i'm trying the most: find a kind of blance in my life with chronic illness. for me that is one of the most difficult (and painful) problems.

wishing you all the best and a lot of wisdom in trying to get this off the ground,

love

corina : )

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tearose,

do you know if there are already any support groups in your area? for our town there are already FMS, MS, arthritis, etc. support groups--support groups for every illness under the sun.

they often have speakers or a specific topic for each meeting or sometimes just a discussion--depending on the size of the group.

maybe you are looking for a different focus though than already existing groups....good luck!

emily

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Guest tearose

For years I looked for a type of support group in this region and the only types around are for cancer, MS, and other more frequently known types of diagnosis like epilepsy. There are just not enough people with POTS/dysautonomia known right now although more people may step forward as the group is publicized.

I never made the time and saved the energy to help pursue this, I was kinda hoping someone else would get the idea and put a group together. Now I have made the commitment to save a small block of time and energy to push forward with this idea. Finally people are interested!

From your comments and from my reading, I realize those with heavy emotional issues are better off in one to one therapy so they get the individual help they need.

My focus is to meet the need for a group of people living with various chronic illnesses who are trying to share and support each other without a major focus on the specific medical illness but on the way to live fully while adapting to their chronic illness/ disability.

I am in communication with a large non-profit organization who is interested in supporting this now and I am feeing very encouraged that it will take off the ground in the not too distant future!

best regards,

tearose

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Guest tearose

The group will serve the Northern Westchester county area. I will know more about an exact location after a planning meeting next week but this area is about an hour north of Manhattan, 20 minutes west of Greenwich, CT, 20 minutes north of White Plains, NY.

tearose

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Good luck!

There might be more people with autonomic dysfunction in your area that you realize. My EP was interested in supporting me in starting a dysautonomia support group in my area. I just have too much else going on, I guess, to push to try to get it going. I think it is something that would be of great help.

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Guest tearose

There just may be others living with POTS nearby! We will see.

The planning meeting is tomorrow and it is for those who don't need therapy, just support of others living and managing with a chronic illness.

I think there is a great need for a group like this. Not focused on the illness per se, rather, focused on the strength and compassion we have had to learn to use to adapt and move forward with grace, dignity and respect.

I'll keep you posted.

tearose

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Tearose,

I was recently trying to find a dysautonomia support group in the NYC-area and there isn't one, so perhaps people would even travel up to you (I might!)

Allison

There just may be others living with POTS nearby! We will see.

The planning meeting is tomorrow and it is for those who don't need therapy, just support of others living and managing with a chronic illness.

I think there is a great need for a group like this. Not focused on the illness per se, rather, focused on the strength and compassion we have had to learn to use to adapt and move forward with grace, dignity and respect.

I'll keep you posted.

tearose

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Tearose,

Sounds like a great idea! (I am chiming in late :P ) Good for you! I hope that it will help many in your area!

All,

I know about Lindajoy starting up a group, but I was wondering if there are any others out there that people attend or have developed etc? I figure posting it would not only help me if there is one in my area, but help others if there is one close to them. Thanks! :)

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Guest tearose

ajw, maybe YOU will be the catalyst to a group starting in your neighborhood! :P

we'll have to share our notes!

Have you any energy or time to think about starting a group? I'm talking with a large non-profit organization to get this one off the ground. Maybe you have a United Way or community center near you that would take over once you presented the information.

What do you think?

tearose

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Have you thought about doing a "webinar" of sorts when you have a speaker so that those of us who don't live nearby or are too ill to travel could still participate? I have seen a couple of these and it's pretty neat...one of them was not interactive so it was just like a skype type thing and was great (veterinary medical training ce); the other was with the telephone and internet at the same time and was kind of a pain (that one was with CFIDS). If you are interested in this, maybe I can do some research to see what's available. I really don't know anything about it but it was really helpful for me being homebound.

Great idea on the group and good luck to you!

Lauren

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