Support groups are just about everywhere for almost everything. There is a great reason for that. It’s because they work! HODA offers both patient and care partner support groups once a month. You can reserve your spot in the group on our interactive event calendar. Did you know that the first program that HODA established was these groups? There is power in relating with other people who know exactly what you are managing.

Not everyone is into support groups. Maybe it’s not their style to be vulnerable. Perhaps the picture in their head is one of sorrow and tears and whining. Thankfully, this is not the case with HODA’s groups. Often, we find ourselves in stimulating conversation about anything from strange symptoms to what is happening in our lives outside of disease. We have had a few tears, but on the whole, it is not the norm.

Why Do I Need Support Groups? I Got This On My Own!

Studies show that support groups, particularly for rare diseases, help patients in a few ways. First of all, patients have the opportunity to share knowledge. This is generally information that is not given to patients by health care providers. Patients have lived experience and can share with one another what does and doesn’t work from experience as opposed to text books. Secondly, making connections and building community are vital for the long term mental health of our community. Both care partners and patients often feel bad for talking about difficulties in front of one another. A group allows the freedom to express those things amongst peers without fear of hurting those closest to us.

Finally, Support Groups allow us to feel seen and heard. Commonly, our voices are drowned out by opinions and unsolicited advice. In a structured group. the moderator can help encourage all voices to be heard. There are times when doctors don’t hear what we are telling them. In a group, you are free to express what you are feeling, without being told that it is in your head, or that you are frustrated with your care. Often, we may not be permitted to express our deep feelings. For example, if one is feeling like they are losing memory, instead of being told, “Oh no, that is just normal aging”, a group of your peers might tell you that they are also losing memory. It helps to normalize the experience.

Your Turn!

Do you attend our support groups? What are your thoughts about them? Do they help you? Tell us about your experience in the comments!