Insiders View of a Support Group

This post is composed of comments from members of a private support group I have been a member of since before Google was a search engine. It's valuable to have support, and it's great to be able to increase your social support network online. The hardest part is finding a group of people who are compatible.

Julie's comment

I found this Group by accident.  I was searching for something else and a little box came up on the right hand side of the page advertising the RA Yahoo Group.  I read a little about it and decided to join. I lingered around for awhile reading the messages and then started sending messages and questions.

I am not one to join any kind of support group, but this group was so interesting to me.  It was nice to find others that suffered with the same auto-immune disease and who really understood everything.  Each of you have contributed to my education of this disease and just listened to my whining - giving good advice.  Others think they understand this disease, but they really don't. The only people who really understand are people who also have an auto-immune disease.

Thanks to each of you who have contributed.  Everyone on this group is so very nice and I thoroughly enjoy knowing you online.  I just wish we could all meet one another in person.  This group is also a special place for me.  Thanks for letting me be a part of this group and thanks again to Penny and Annette for overseeing everything.  And - Thanks to all of the members for being so supportive - not only about RA - but, about everything.  
Penny, the group "owner"

I’m glad I invested in this group too, it’s such a special place for me and you all are like family. I do enjoy our time together each day so much and as you said I’ve also learned a huge amount. I guess there are many things that the doctors either don’t have the time to explain or many things that they simply have no idea about because they don’t live it. And to think when I first joined here, I really didn’t think I needed a support group. How wrong can you be?!  

Roze

I am happy you found this group too.  I have learned so much from you and always appreciate your sharing.  I think our group is unique.
Maggie

I have to say I love this group a lot. I am not in any other group. Don't need to be as everyone here is just the best and I have learned a lot from this group.

I would be lost without all the support I get from everyone here. I class them as my second family  xx.uk 

Grammy 
I'm with you Maggie.   This is my only group as well.   Just feel like I'm always behind lately since shuffling kids more often

Our Doctors
Roze
My idea was to make a list of things that docs could share with their patients that we had to learn from each other, and/or things that would make our lives a little easier without having to go through trial and error.

Penny
We were talking about the things that we’ve learnt from being in this group, versus what our doctors have taught us. I said to Roze I wasn’t sure if the reason for the lack of info from the doctors was due to lack of time, or lack of living with RA themselves.
Polly

I think they know what the "words" mean but they don't know what the "experience" is.  For example, I don't think my pulmonologist (as good as he is) really appreciates what it is like for me to have the lung conditions and RA running around my body and the Fibromyalgia kicking in some pain here and some pain there. They seem to live out of their textbooks and we live out of our life's experience.

Benefits
Maggie

I discovered from all of you, for example, that I was not lazy.  In the beginning, because so many treat you like if you'd just do a little exercise you would be all well again, and you all taught me that my experience was real and you validated that.  I think validation is the best medicine. 

Grover

Penny

Me too Maggie and I’m not lazy either. I do have a group of girlfriends online, we all met in a chatting mums group when I first went online about 15 yrs ago, and many of us have now met in real life when we had a meet up in Dublin. We trust each other implicitly like a group of sisters and have seen each other through a myriad of trials and tribulations and through a ‘lot’ of laughs. They are like family and so is everyone in this group to me.

Maggie

Like you I don't tell my husband half of the things I worry about. He has enough on his plate.
Penny

That’s a good valid point, sharing things here takes some of the burden off our partners I’m sure of that. 
Roze
That is a considerable benefit to not have to share with husbands when you can share with us.  Good point Julie

Penny 

Well I have one idea right away Annette, and that was thanks to you. You mentioned the silver ring splint company to us, and that led onto me not only getting my own splints made, but in being referred to an OT, something my rheumy (not one of the ones I’ve had over the years), had ever mentioned despite me already having finger deformities. These things should be discussed early on in my opinion and not after the damage has already been done. Prevention is always better than cure

Silver ring splint from Digisplint.com above and on my finger at left




Red

Having support is a good thing... I knew I needed it and feel blessed I have all of you here... Even if I don't post as often as I should...

Becoming an Informed Patient

Suppose you were just diagnosed with a health problem that is serious or will last for a long time. It's probably a complete shock to you and you can barely remember the terms that the doctor used when he told you the diagnosis. If you are back home with nothing in hand you could call the office and ask if they have any brochures or info booklets they can send you or that you can pick up. 

If you are at or near a hospital you could check on whether there is a patient library. If you make this a starting point the librarian can direct you to publications and pamphlets that are on hand, and also recommend some internet sites that are reputable and understandable. One advantage with a patient library is the variety of languages - they try to accommodate all patients in the language they are most comfortable with, another is the intelligent interest that the staff takes to help you.

                 Paul B. Helliwell Patient and Family Library at Toronto Western Hospital

You need to start somewhere and you don't want to waste your time on sites that try to sell you products that are both very expensive and ineffective. Don't forget, even a placebo (non-active version of medication) "cures" some people. If it sounds too good to be true, it is.

                                      Models in the patient library

The information from the doctor and hospital library should give you some ideas for further reading as well. It will help you a lot to know the "vocabulary" of the disease. Next time you go to an appointment you will understand more and ask better questions if you know the correct terms.

It is helpful to keep a record of your appointments, procedures, treatments and lab reports. A loose-leaf binder is good. It can expand as you need.  Another necessary item is an up-to-date list of all of your medications with dosages. Take these with you to all medical appointments. Here is a link to a post by Lisa Bonchek Adams about the way she uses her binder.

Another place to find information and possible support is the website of the national organization specific to your disease (best for common problems, less helpful for rare disease). As an example The Arthritis Society in Canada has information, videos and 'Taking Charge of Arthritis' programs as well as physiotherapists, occupational therapists, social workers and online community. Sites like that are a big help.

When looking at internet sites those that are .gov or .org are usually the most reliable.

Other health care professionals also are a good way to collect more info and ideas. If you see a physiotherapist or an occupational therapist they also have a little more time to look at You and help with encouragement and relevant personalized advice.

There are many patient groups that you can join but finding a good one can take time. I have benefited from advice and support on Rheumatoid Arthritis, Shingles, Sjogren's Syndrome and Fuchs Dystrophy to name a few. You often find a member or moderator who is a "patient expert" in these groups. Good ones usually point out that any advice they or the group offer is not medical advice so you should check with a doctor. Here is a Point of view blog post by Dr David Lee Scher about Online Patient Communities.

Often when you want to complain or talk about a problem you might not want to make those close to you worry more. Sharing with virtual friends takes pressure off of your real life relationships.

In any health category there are people who stand out clearly as well-informed patients and it's worth learning from them. They go further than just trying to help themselves. They share information and they advocate for more research, better treatment and change for the good. 

                                             Glastonbury Maze

With online communities you should make an attempt to find out who is behind the site and what the privacy policies are. That helps you find out the motive for the existence of the group. In Yahoo health groups as an example, you know that Yahoo hosts groups to deliver advertising for sponsors. That's clear cut. If you can't find a sponsor name when you look for it, it could be that the payoff for the sponsor is the information you provide.

Here are some bonus tips from good friends in my online support group. We've known each other for many years now.

Here's one from Roze:
"I learned early that my health was my responsibility.  I don't go to doctors who don't listen to me and if I have a question I research it and ask my doctor for his opinion.  When it's down to the wire for a decision on my care I realize it is my choice and my call." 

                                                                        Lulu

And great tips from Julie too

"For many years, I thought doctors were "God" and believed everything that they told me and went along with their suggestions.  I found out when my Mother was ill that some treatments probably weren't necessary or helpful and just caused suffering.

I decided then to become more informed.  I bought some medical books and carefully read them.  A man that I worked with that had ties to a big Medical Facility had the Merck Manual.  Although most of the language was for physicians, I could decipher most of the information.  The more I learned, the more I discovered that there were usually alternatives. 

When I first got RA, I didn't know anything about the disease.  I took every pamphlet from the rheumatologists office and read each one thoroughly (I still have them after 20+ years).

NOW - there is the internet with tons of information on any subject that you might like to know more about.  I am kind of a researcher anyway, so I spent quite a bit of time researching different health problems and medications.

I no longer submit to unneeded treatments or tests.  I learned that you can refuse a procedure if you want to do that.  Sometimes, I think physicians recommend tests just because they own the equipment and can make money by using them.

When I go to a physician with a problem, I research the problem first so that I will be somewhat knowledgeable.  Then, instead of giving the doctor MY diagnosis, I let him first tell me what he/she thinks the problem is and how to treat it.  I was guilty of going in and telling doctors what I thought was wrong and how to proceed. After all, I am paying the doctor for his medical education and experience.  If I disagree, then I will mention that perhaps another treatment might be better and see what the expert says.  I believe that people have to look out for themselves when it comes to medical care.

A brilliant professor that I had in college told his students to "pick other peoples brains".  I always try to do that and get information that I otherwise would not know.  I think that nurses that work in hospitals always have good suggestions and know who the best doctors are." 

I particularly like Julie's last 2 paragraphs.  

This is not a comprehensive list of suggestions. Feel free to add more in the comments. One thing missing is the knowledge and confidence you can gain by volunteering. Here's a link to my blog post called Volunteering With RA and another that talks about how volunteering expands your sense of time.

The Expert Patient

After a few years with a chronic illness we certainly become experienced, but that alone does not make us experts.  Achieving expert status takes work.

                                We Are Experienced

Does it really take 10,000 hours to become expert? In the case of illness endurance alone is not enough.  You've got to go out of your way to find out more. Educate yourself and you may become a knowledge expert, a support expert or maybe a connector or aggregator who puts information and people together for everyone's good.

I have found active Yahoo Groups in specialized areas. Sometimes the level of information available is due to one dedicated person.  Often it is core group which patiently covers the topics over and over as new people come along with an acute problem, use the advice and move on as their problems resolve. It's hard to keep a group going long term and many of them are gone when you go back a few years later.

I was lucky to find some real experts who saw me through two bouts of shingles.  

Illustration from Atlas of Human Anatomy, Frank Netter MD. Illustration showing how shingles spreads in bands (Dermatomes) on the body

When I went looking for a group with information about Fuchs Dystrophy I think I found the motherlode at a Yahoo group called fuchsfriends which is "a place of support and information for people with Fuchs' corneal endothelial dystrophy"

                                                 ehealthwall.com

These "patient experts" are so much help because they not only have a narrow focus on a specific disease but also they also have personal experience.  I am a member of another group where the moderator's signature is "Gina, Not an MD". Her advice is so good that the disclaimer is necessary. (Of course all such groups come with an additional disclaimer saying advice is not to be construed as medical advice)

Online support is a valuable commodity and I am lucky to be in a very long term supportive group at ra-factor.  Gilly, the group owner and "list mom", is one of the most empathic and consistent people I know.

                               Valuable commodity  dhotw.com

She said she does it because she can't imagine not doing it. Even on vacation she wonders how we all are doing.  She says "It's nice to talk to people, like a family" And after many years of conversation with these friends who "get it" because their problems have similarities to mine I would like to go visit them all in real life.

It would be quite a journey - to the UK, Australia, Canada and all over the US. Where but online would we ever have met and shared so much ?

And here we all are (approximately):

There are complaints about this map. More people wanted to be the cat than anything. Others said "Where are the dogs?" Our Texas member said we might as well just put a gun on Texas based on some current political moves.

                              A favourite "Welcome to the Group" gif