Patient Support Groups

You Do Not Have To Go Through It Alone

Sometimes the emotional side of illness can be just as hard to deal with as the physical side. You may have fears or concerns. You may feel overwhelmed. No matter what your situation, having other people to turn to will help you know you are not alone.

Here are the kinds of support you might want to seek:

Family and friends

Talking to family and friends you feel close to can help you cope with your illness or condition. Just knowing that someone is there can be a comfort.

Sometimes it is hard to ask for help. And sometimes your family and friends want to help, but they do not want to intrude, or they do not know how to ask or what to offer. Think about specific ways people can help you. One idea is to ask someone to come with you to a doctor's appointment to help ask questions, take notes, and talk with you afterward.

If you do not have family or friends who can provide support, other people or groups can.  Take advantage of any support that is available to you.

Support groups

Support groups are made up of people with the same disease or condition who get together to share information and concerns and to help one another.

Support groups may or may not be led by experts. Self-help groups are similar to support groups but usually are led by the participants. The names "support group" and "self-help group" sometimes are used to refer to either kind.

Research on support groups shows that participants feel less anxious, experience less depression, have a better quality of life, and have more success coping with their disease or condition. Similar findings have been reported for self-help groups.

Lyme Disease Support Groups in Iowa

Regular support chapters across the state meet regularly for information sharing and support.  Locations are Des Moines / Urbandale, Cedar Rapids, Grinnell, Sioux City, and a new chapter in Council Bluffs, Iowa.

Contact us for locations and meeting dates.

Online support or self-help groups

The Internet has support or self-help groups for people whose concerns and situations may be similar to yours. You can also find "message boards," where you can post questions and get answers. These online communities can help you connect with people who can give you support and provide information.

But be careful. Not every idea or treatment you come across in these groups will be scientifically proven to be safe and effective. If you read about something interesting and new, check it out with your doctor. Always be cautious about giving out personal information such as your name, where you live, etc.

Online support can be found at this discussion forum:

www.lymenet.org (click on flash discussion)

Counselor or therapist

A good counselor or therapist can help you cope with sadness, depression, and feelings of being overwhelmed. If you think this kind of help might be right for you, ask your doctor or the Lyme Disease Association to recommend someone in your area knowledgeable about tick-borne diseases.

People like you

Every person is different, of course, and every person's severity of disease or condition will affect them differently. But research shows that after getting a diagnosis, many people have some of the same reactions and needs.

You might want to meet and talk with someone in your own situation. Someone who has "been there" can talk about the real-life outcomes of their treatment choices as well as how they have learned to cope with Lyme disease or other tick-borne illnesses.  Lyme disease support groups can help you make this kind of contact.

Articles:

Lyme Disease Patient Bill of Rights

Looking Good, Feeling Bad - article by Geri Fosseen