Finding Support
There are ways to find support as you go through this journey. There may be people in your area you enjoy spending time with, or you may choose to connect with others online. You may be able to meet parents who have a child with the same diagnosis. Talking to someone who has gone through similar circumstances can be emotionally uplifting.
Usually, you get support from the people around you—your informal support system. This might be your friends, neighbors, family, or others you have regular contact with. You may find your relationship with some people changes over time.
You may become closer to some and grow apart from others. You may need to make new friends. This is not uncommon with any major life event, and all of us change and grow due to our life circumstances. Sometimes the people you interact with in your everyday life can give you the support you need. Other times you will have to work to identify different ways to get support.
Here are a few examples of ways to find support.
- In-person support groups—Community centers, children’s hospitals, places of worship, and local disease-specific groups are a few of the organizations that may offer in-person support groups. Some groups meet weekly, some monthly, some less frequently. It is alright to try several groups to find one that fits you best.
- Online support groups— This may be in the form of an email listserv or a group on Facebook. Online support lets you connect with other parents regardless of where you live. Some families have found this especially helpful when their child has a condition that is less common or rare.
- Peer-to-Peer support— A trained support partner or mentor is someone who has experience providing emotional and informational support to another parent. Parents may be matched based on diagnosis or similar circumstances.
- Spiritual support—A church, synagogue, mosque, or other places of worship may offer a community of support and comfort. You may find that you have questions about your faith. Talking with your clergy or other spiritual leader may help.
- Professional support—Seeing a doctor or professional counselor is another option. You may benefit from talking to someone who is neutral. They can offer you new ways to manage your feelings. This is especially helpful if you are struggling with overwhelming or persistent feelings of sadness or depression. If you feel in danger of hurting yourself, contact 911 or the National Suicide Prevention Hotline at 800-273-8255, or go to your local hospital immediately.
