HD Support Group offers more than meets the eye

Thursday, May 01, 2014


By Amanda Miller 
UI HDSA COE Social Worker

The UI HDSA COE HD Support Group meets on the fourth Sunday of each month, and is always ready to welcome new members. Click here for more information about our support group.

Have you ever attended a support group meeting? Some of you will think “of course!” But many readers will respond with “no, I should, but I haven’t yet because (insert string of justifications).” 

The reality is, most people impacted by diseases like Huntington disease, whether they are caregivers, at risk, presymptomatic or living with HD, have never been to a support group meeting. The reasons for not attending vary from individual to individual and family to family. Among the many reasons, the most common beliefs (and I’d go as far as to say misconceptions) about the value of support groups fall into one or more of these categories. Let’s examine each misconception. 

1. I don’t really need it yet, but when I do, I’ll look into it. Perhaps you just found out HD is in your family, but you’re not “sick” and don’t know anyone who is. Perhaps you are just beginning the caregiving journey and you do not yet feel that your stress is to the level of needing peer support. Whatever your stage in the lifelong journey with HD, I assure you, it is never too soon to discover others like yourself. Support groups provide a platform for individuals and families to connect with others who can guide, share, cry, laugh, celebrate and grieve with each other. To those of you thinking “I’m just not there yet,” I challenge you to restructure your view of what a support group can offer. The group isn’t simply a mechanism for responding to problems. It offers the chance to build relationships with those who can help you before you find yourself elbow-deep in crisis. For the financially savvy, consider this your savings account for support: you build it now so you have it later. 

2. I’m not really comfortable talking about my feelings with strangers. The second most common reason for not joining an HD support group is the fear of vulnerability in a room full of strangers. With time, the room is no longer full of strangers, but rather a collection of individuals with whom you’ve had the opportunity to develop meaningful, mutually supportive relationships. Now, its no secret that the first time you walk into support group, you will be with strangers. Fear not! There are no mandatory requirements to share your deepest, darkest secrets and fears. In fact, I counsel potential support group members to come to the meeting with the main goal of simply listening. Hear the experiences of others, let yourself be open to the idea of meeting others impacted by HD, but know that there are no rules of engagement (beyond showing respect to those around you). All you have to do is simply be. Be present in the room, and be mindful of those around you and their circumstances. If you feel comfortable, share your reasons for attending. Perhaps you have a specific question (about a symptom, for example); perhaps you don’t know why you’re there. The most beautiful part of an HD support group is that you don’t have to know the answers. In fact, you don’t even have to know the questions. All you have to know is your level of participation is completely up to you; we will respect your entry into the group and support you as you figure out your comfort level. 

3. I talk to my family and friends about the issues, so I’m pretty well supported. A theme present in so many HD families is the beautiful existence of informal support from family and friends. So fortunate are those who have this. Support groups are not, in any fashion, designed to replace this. Rather, support groups augment the love and comfort you find in your personal life. They provide the opportunity for people experiencing similar life struggles to share with each other their successes, failures, and everything in between while not having to worry about burdening their friends and family. In a support group setting, members can even ask about experiences they may not feel comfortable asking other members of the family (picture having a conversation with your mother about your partner’s changing intimacy). I don’t discount the value that informal support provides, but I do emphasize the value of exposures to others outside of your own circle. 

Finally, there is an aspect of the support group that is often overlooked: the value that you as a member provide to the group. You have the opportunity to have a magnificently positive impact on others who are living in circumstances not unlike your own. Many group members value their role in the group as it relates to what they can do for others, and in that service, they find peace. 

In my decade as a support group facilitator, I’ve had the privilege to meet hundreds of families, all dealing with their own struggles living with chronic illnesses. Every person with whom I’ve spoken has started out having at least some reservations about joining support group. Many people cite the reasons listed above, others have their own, but my message is the same to all of them. This disease isn’t easy and you don’t have to do this alone. Find a support group near you. Hear about the experiences of others. Contrary to the myth, seeking support isn’t a sign of weakness; it’s one of the best indicators of the strength a person carries. HD is a long and challenging opponent; give yourself the opportunity to have as many resources as possible in your fight. I challenge you to consider bolstering your corner of the ring, and I would like to extend my personal invitation to join our supportive circle. 

“Dare to reach out your hand into the darkness, to pull another hand into the light.” – Norman B. Rice