Fighting Morgellons disease can be a lonely battle. Because it is not a well-known condition, it can be difficult to find support. However, in the U.S. alone, there are more than 20,000 cases of Morgellons. That means that it is possible for you to get support from other Morgellons patients. If you’re looking for a connection with another fellow Morgellons sufferer, the internet is your best friend. With some searching, you can discover if there are in-person Morgellons disease support groups near you. If not, there are many online resources for Morgellons awareness as well. Here are some tips on where to head first.
Search online for in-person support groups
A simple Google search just might reveal an in-person support group located near you. You’re more likely to find Morgellons support groups near larger cities, but even some smaller towns have Lyme disease support groups (which, although it’s not the same disease, can be just as helpful as Morgellons-focused groups). Try typing in a few different keywords (such as Morgellons, support group, awareness, etc.) to locate a group that’s close to your home.
Check Morgellons awareness sites
The Charles E. Holman Morgellons Disease Foundation is a grassroots activist group dedicated to the research, education, diagnosis, and treatment of Morgellons. Their mission is to find the cause and cure of the condition. Their site provides patients with a wealth of resources, including current research links and health tips.
Head to Facebook for support
Facebook is a great way to connect with fellow Morgellons sufferers (especially if you live in an area that doesn’t offer in-person groups). Most of these groups are “closed,” which means that you must make a request to join the group. You’ll then be approved by the admins for the group, and you can get started posting and reading other people’s posts. A “closed” group is actually a good thing since that means the admins are working to keep the group Morgellons-focused (no spam posts!) and make it a conducive environment for people discussing personal and sensitive medical information. Here are a few pages and groups worth looking into on Facebook:
- Morgellons Awareness: This page offers posts from other Morgellons patients, as well as articles and resources to help with Morgellons awareness. Morgellons Awareness is open to all, so feel free to like or follow the page to get up-to-date notifications of new posts.
- Morgellons Extreme and Emerging Illnesses: This group currently has over 2,300 members who can connect with one another, ask questions, or just post concerns regarding their Morgellons diagnosis.
- Morgellons: An Open Forum: With more than 2,650 members, this forum provides opportunities for patients to interact with one another in a safe environment.
- Morgellons Healing: This group (with over 1,400 members) offers healing tips and protocol to help other sufferers on their healing journey.
MeetUp.com offers an easy way to find other people in your area who are dealing with Morgellons disease. Try searching their site for local, in-person Morgellons or Lyme disease support groups. If you don’t find one with this specific theme, consider joining an in-person chronic illness support group – there could be some overlap in support techniques with these types of groups that you might find helpful. Any supportive environment will help you feel more connected and less alone on your journey.
Be open to groups that meet via Skype or over the phone
Searching the web for Morgellons support groups might also lead you to organizations that hold meetings via Skype or over the phone. For example, a New Jersey group called “Get Your Life Back,” led by author Richard Kuhns, holds meetings about once a month for members. Typically, about 30 individuals get on a conference call where they can share their experiences with Morgellons, offer each other support, and get their questions answered. Just because these groups are not held in person doesn’t mean they can’t offer a supportive environment for people who often feel isolated.
Consult with your doctor
Your doctor might know of popular Morgellons support groups in your area. It’s possible they can recommend meet-ups where you can connect with other Morgellons patients. Let them know that you’re interested in being a member of a support group so that if other patients express interest as well, your doctor will see there’s a need for this type of group.
Start your own group
If you aren’t able to find support in a way that feels comfortable to you, consider starting your own group – whether in-person or online. Because Morgellons disease is not extremely common, you might need to develop your own set of resources to get the right kind of support for your specific needs. Starting your own group can also help raise awareness about Morgellons disease, which can only help the condition to become more well-known and researched.
You don’t have to be alone in your fight against Morgellons. There are definitely other people going through the same struggle as you. To get support, try these tips to find Morgellons disease support groups that might help you through your journey.