I feel fortunate to be a part of the KDA. The mental and emotional support I have been given over the last ten years has been fantastic. The KDA Chat Room and Forum are two vehicles that have helped me developed friends around the world. We all have one thing in common: Kennedy’s Disease.
Support groups are difficult to set up initially. If it had not been for the tireless efforts of Susanne and Terry Waite, the KDA would have fallen apart within the first few years. It takes a special kind of person to withstand the emotional highs and lows of setting up and maintaining a support group. The reward? Today, the KDA touches the lives of thousands of people.
I have heard from several people in the United Kingdom and Australia this month that are looking for support a support group in their area.
Back in September of 2009, I commented:
“The person with the defective gene is not the only one that has to learn to accept this health condition. The rest of the family is also intimately involved in this same learning process. Everyone in the family at some points needs to be able to say, "It's okay, I can live with this." Children will quickly sense your stress, fears and discomfort. They need to be able to discuss this health issue openly with you and understand how it might affect their lives.
By openly sharing this information, it helps release some of the fears and questions that the rest of the family might be harboring, but is afraid to voice.”
And then in October of 2009, I discussed how to set up your own support network. The key is to:
“… surround yourself with positive people.
Having close friends and family that you can talk with and count on can make all the difference in how you approach and live with Kennedy's Disease. Building these relationships takes time and effort. The rewards, however, make it all worthwhile.
A support network is different from a support group in two key areas.
- A support network is made up of family members and friends; people who know and care about you at a personal level.
- Support networks are very informal (casual) rather than a structured program scheduled on a particular day and time. You can call a family member or friend anytime just to chat, to schedule a lunch with them, or to meet somewhere. The talks are informal allowing both parties to share their thoughts and concerns. You are there for each other.”
“Developing a strong support network just does not happen. It requires a little bit of work on your part. Relationships are a two-way street. You have to be a good friend to have good friends.
Here are several pointers from the May Clinic article on how to develop strong relationships.
- Stay in touch: Answer phone calls, return emails, respond to invitations are a few ways to let people know you care.
- Be proactive: Do not wait for someone else to make the first move. If you meet someone that you believe could be a friend, invite him or her for coffee or lunch. Strike up conversations with strangers and see how things go.
- Know when to say "no" and when to say "yes": Do not decline an invitation because you feel insecure or shy. Only spend time with people that you find supportive.
- Do not compete: Be happy instead of jealous when someone succeeds or does something that you would have liked to do, but did not or could not.
- Be a good listener: Find out what is important to your friends and family. You might discover you have more in common than you think.
- Challenge yourself: Keep looking for ways to improve your social and communications skills. Maybe it is by complaining less, being more generous and forgiving other's faults.
- Do not overdo it: Especially in the beginning, be careful not to overwhelm your family and friends with phone calls, emails and invitations. Give them some space. Save those high-demand times for when you really need them.
- Appreciate your family and friends: Take the time to say thank you and express how important they are in your life.”