How do you feel about support groups that are centered around a specific illness or health problem? I run a support group for people with chronic illnesses which hasn’t been meeting for a few months due to my being too sick to take charge of things.

I’ll be starting it up again in September and I’m looking for ideas to keep the group positive. I don’t want it to be a pity part but a group where we can find solutions to our problems or at least feel heard and understood. What ends up happening sometimes though is that we have several very lonely people in the group who don’t get out much. The group is their time to socialize which is fine, but it’s also their time to complain.

I can sympathize but I can’t let them control the group and have other people just listening. I’m not good at getting the conversation turned around to another topic. So we usually end up listening and I end up getting worried that the other members are getting annoyed. Our meetings go on too long also because of this. This is difficult for me as I’m there early to set up and then have to stay to clean up. I’m exhausted on meeting days.

Any advice or suggestions? If you are a member of a support group or run one, please let me know some of your ideas.

March is National Multiple Sclerosis (MS) Month. MS is a difficult disease to diagnose and to treat. It affects 1 in 700 people in the United States . (from Understanding Autoimmune Disease:NIAD)

There are many organizations that provide information, support and funding for people with MS, caregivers, family and friends and for physicians and researchers. Here is a short list:

• National Multiple Sclerosis Society
• Multiple Sclerosis Foundation
• Multiple Sclerosis International Federation

Often when the diagnosis of MS hits, people may feel that it means a death sentence. It helps a great deal to find a doctor that specializes in MS. There are often clinics in major research hospitals also.

Online support, support groups and blogs offer people with MS a way to connect with others in the same position. These are sometimes based on weight loss groups where members can share their struggles and their triumphs.

Ever since I was diagnosed with a rare disease, named of all things – Myasthenia Gravis – I’ve learned to do research. I started out at the library because that was the way I was used to doing it. Then as I realized the books were old and the information was outdated I began to use the internet to learn about this disease. When I did I was able to find out about the Myasthenia Gravis Foundation which then helped me to locate a specialist for this neuromuscular disease.

As my diagnoses increased I researched more on the internet. I learned what sites were from accurate medical authorities and what were sited trying to sell the latest cure-all. My neurologist suggested staying informed of new treatments, support groups online, and any new information online. I’m one of the lucky ones. Some people with chronic illnesses have doctors who dislike when their patients do any type of research.

Some suggestions for anyone doing medical research are to keep it in perspective and to look at it in the framework of as much legitimate information you can find. Do talk to your doctor about what you’ve found if you feel it is something helpful. Find some sites where people who have the same diagnosis meet and hear their opinions. Be careful with that too. Some people on social medical sites are there to sell something.

Keep your eyes open for snake oil salesmen. They may pitch the latest juice, plasma cutting, a vitamin or even some type of counseling that you can only get at one certain health resort.

I’ve had the pleasure of helping to run a support group for people with chronic illnesses for a year now. Members have come and gone as they either did not feel the group was to their liking or their health deteriorated or they health improved. We’ve met at two different churches and had two different Pastors assisting us in leading the group. We’ve had parties, fellowship, Bible studies, laughter and tears.

For people with serious health issues having a place where other people understand what you’re going through and being able to speak openly about is a relief. Many times our own family doesn’t understand us, even our doctors may hurt us with comments they say or the way they treat us.

Our group is Bible based. We use Scripture to learn to cope, to heal emotionally, to come to terms with our issues, to learn that it’s OK to be angry even at God, and to know that God doesn’t punish us by making us sick.

We also use resources from the internet, books, magazines and newspapers to help each other learn about various illnesses. Our meetings are somewhat informal but we do have an agenda to help keep things on track.

Sometimes people need to vent and that’s alright but we really try to keep things as positive as possible, offering people hope through God’s promises. My church has a new Pastor and he’s been attending our meetings. He brings us God’s word in a way that opens our hearts to understanding more easily. He sometimes shares a song with us on his guitar. I know that the Holy Spirit speaks through him as he ministers to us.

Please pray for our support group. We’re going to begin putting out fliers in doctors’ offices to see if we can offer help for more people. The group is open to our community not just our members and it is so nice to have people visit with us in our church where we can show them God’s love.

A blogger friend has started a blog to help her brother-in-law fight cancer. Mike had Esophageal Cancer more than a year ago. He had to have his esophagus and part of his stomach removed. He also went through chemotherapy at that time.

Mike learned that the cancer has returned in his spine and ribs. His doctors have given him 4 months to 2 years to live. With a loving wife, children and extended family he is not giving up hope.

The chemotherapy that he requires now is not fully covered by his health insurance as it is considered experimental. He also is seeking alternative treatments and taking supplements so he can withstand the chemo.

Please visit Fighting For Mike. You can make a monetary donation, send used ink cartridges or cell phones for recycling, pray and spread the word to the blogging community, your family, friends and even your church.

There is always hope when there is love.

When I became seriously ill about 4 years ago I was unable to work any longer. I tried to by first giving up one part time job, then the other. Both of these were in my given field which was Social Work in a health care environment.

I held onto my full time job as long as I could. It was a telecommuting job as a Customer Service Rep. I ended up really enjoying it plus the perks were out of this world. I could work basically any hours (I did have to make phone calls to retail stores during normal business hours, but the other time was my own to decide when to use it), I could nurse my infant, not put her in daycare, be home when my older daughter came home from school and go to school events. I also didn’t need to drive anywhere, saving gas money, didn’t need a work wardrobe, saving lots of money and didn’t need to eat lunch out as I often did when I worked away from home.

My supervisors were very understanding when I got the diagnosis of Myasthenia Gravis. They allowed me more time off for doctor’s appointments, understood if I didn’t get something accomplished on time like I normally would and just “got it”.

But as my muscular weakness progressed, I had issues talking on the phone. I had store managers think I was drunk due to my slurred speech, the employees and even my supervisors couldn’t understand me. I became so fatigued that I made errors and lots of them.

I worked and then slept. That was my day. Nothing else was done. I could barely care for my then toddler. I ended up having to have a caregiver come to our home to watch her. The stress was making the disease worse.

I’ve often heard it said that men identify themselves by their work. But I did too. When I realized I couldn’t work any more, it was one of the hardest decisions to make. I felt like a nothing. I remember going to a counselor and telling her that I viewed myself as a “slob”.

About 6 months later I found DOUA. This is a non-profit group that helps people with any type of disABILITY to learn how to sell online. I just wanted to do something, anything that felt like work! I joined and sold some things from around my house.

I loved this place. It’s not only a teaching site, but a support group too. The little I learned started to help me gain back some of my confidence. I became a grad student after selling 5 items on eBay. Then I was asked to be a mentor. This was  such a shock to me!

I still had the mindset that I couldn’t learn so how could I teach. Marjie Smith, the founder and Executive Director, told me that I could help people by being like a cheerleader for them. Giving them a push to strive for more.

I’m happy to say that although it’s taken me years, I’ve kinda sorta got a feel for html. I helped make my own website. I have an eBay store and two blogs. I can get around the internet and join message boards and places like Stumble Upon, Mosaic, My Space, etc.

DOUA gets the job done. It is my favorite non-profit organization because it gives “a hand up not a hand out”.