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The Chronic Illness Community And You


Let’s start with a definition of community. It’s a word people (healthy or not) use often – but the meaning of it is quite special to those of us who are living with chronic illnesses and interacting with others who are living in similar circumstances.

Community:

A social, religious, occupational, or other group sharing common characteristics or interests and perceived or perceiving itself as distinct in some respect from the larger society within which it exists (usually preceded by the): the business community; the community of scholars.

As just about any chronic illness patient can probably tell you, the value and support of the chronic illness community is just extraordinary! Most people I have met in the 30 years I have been living with chronic illness find the validation and phenomenal compassion of fellow patients to be of utmost importance. The chronic illness community provides irreplaceable understanding and it provides for mutual support.

There are times that the only people who seem to be completely able to identify with the struggles faced by persons living with chronic illness are those who are living it themselves. This is where validation becomes so important. Healthy loved ones, friends and co-workers who try their very best to understand the daily challenges of living with chronic illness may, ultimately, not be able to do so. This is where support from people who “get it” becomes key.


As far as compassion is concerned, our chronically ill peers have the ability to empathize since they can relate firsthand to symptoms or experiences. This isn’t to say, of course, that our healthy loved ones or friends or co-workers don’t care. Obviously a great many of them do. (Granted, most people living with chronic illness have had some experience in the workplace that involves people who are not very compassionate or understanding). The majority of healthy people around us, in my experience, do make attempts to understand and do try to show that they care. (Realistically, there will always be people who don’t fall into this category but I think most people try in their own ways to show their compassion).

At the end of the day, though, I believe the reason that chronic illness communities of all sorts (online and off, support groups, messages boards, blogs, Facebook groups or other Facebook interactions, Twitter niches for chronic illness patients to interact, etc.) are so valued, so highly utilized, and so appreciated by such large numbers of patients all stems back to these core elements… validation and support.



So very many of the experiences I have had firsthand – and those I have witnessed other patients having – are examples of such an excellent outpouring of concern, caring, and empathy from patient to patient in all sorts of situations. I feel extremely fortunate to have gotten to know so many wonderful, thoughtful people on my own journey!

The chronic illness community truly is an amazing group of people. We are fortunate to live in an era where technology enables us to connect with far more people than we could have in years past. At 43 years old, I remember the pre-Internet days of searching for medical information and trying to find other people living with the same symptoms as me. It’s wonderful to have the Internet to enable us to make far more connections than could be made otherwise… with people the world over!



What do you appreciate about the chronic illness community? How have you benefited from being a part of it? How does it make you feel to be able to give and take information, engage in mutual support, and even help fellow patients cope with the stress of living with chronic illness(es) and chronic pain?


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: The Chronic Illness Community And You

4 comments

1 DarleneNo Gravatar { 05.25.12 at 9:03 pm }

Jeanne. I find the support from the chronic illness community as being key to my staying sane (sane) lol? Years ago, before I got my diagnosis of IC and then VV, IBS etc. there was no support at all. The internet groups were life saving. It’s so very true, people that are healthy try to understand, but most do not. Thanks to you and people like you Jeanne, we are never alone.

Hugs, Darlene

2 JeanneNo Gravatar { 05.29.12 at 11:17 pm }

Darlene:

It really is amazing how incredibly helpful the chronic illness community can be, isn’t it? I certainly would not ever choose to return to the pre-Internet years – where online support didn’t exist yet. It can be a heartbreaking thing… the gulf between the healthy and those who are not healthy. The misunderstandings, hurt feelings, and lack of validation can be devastating to relationships and to affected individuals. Thanks to people like you, Darlene. You are constantly sharing your wisdom with fellow patients… and your deep compassion for others makes a difference to so many. In these last few months where I’ve been online so little, it’s people like you who I really miss talking with so much. I know you’re feeling even sicker than usual right now. I hope things turn around for you very soon. Thinking of you!

Hugs,

Jeanne

3 darleneNo Gravatar { 05.30.12 at 7:24 pm }

I miss seeing you online too! I hope we all feel better soon, and are able to enjoy the summer, my favorite time of year.

Thanks for all that you do Jeanne, no matter what is going on in your life!!! D

4 JeanneNo Gravatar { 06.05.12 at 11:09 pm }

Darlene:

I hope you’re feeling much better! Summer is my least favorite season in the aspect that heat intolerance and fainting are not fun. I dread the hot weather every year. I hope you can enjoy this season ASAP.

Thank you! Ditto!

Jeanne

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