Participating in discussion groups about your condition

One of the groups that I’ve been active in over the years has been FND Hope‘s collection of Facebook groups on Functional Neurological Disorder (FND), the condition I was diagnosed with in 2003.

There are both risks and benefits to participating in these groups, but generally, I’d argue that they’re worthwhile, especially early on and as you learn to live with your condition.

However, not all groups are created equal, so I want to talk to you about how you can determine if the group is worth your time/energy/investment and what to expect and watch out for when participating in groups like this.

Where do I find these groups?

They exist all over the place online. I’m most active in Facebook groups, but once upon a time I participated in a Yahoo group on Conversion Disorder (this was before the name change was recognized) and I know that there are multiple other groups out there.

Often, nonprofits that focus on particular conditions have created some way for members to communicate and support one another, whether it’s some sort of email-based interaction, Facebook (group), Twitter (hashtag), Instagram, or some smaller social media option.

In some cases, it may be a small private group, and in others, it’s a larger and very public virtual space.

Sometimes there are also in-person groups as well (though that’s less likely right now with Covid-19).

Those are most likely to be found at hospitals that specialize in those conditions or at nonprofits designed to support a specific diagnosis.

I have not participated in an in-person meeting before, as the only FND one that I’m aware of in the US is on the other side of the country (Stanford) though there are several of these groups in the UK.

To find groups focused on your particular condition, I recommend searching for information resources, especially those nonprofits I mentioned, and see if they mention a particular space to gather.

You also can search for your condition on whatever social media platforms you prefer to use and see if there’s a group there. Not all groups are created equal, so be prepared to do multiple searches and potentially try out multiple groups before you find a space (or spaces) that feels right for you.

Why would I want to participate?

Becoming disabled is often an extremely lonely and challenging experience. For most of us, that initial period of disability or loss of independence can be excruciating, and often involves losing friendships and a fundamental change to at least some of the relationships and expectations around us.

It’s comforting to find people “like us,” especially when we suddenly find ourselves less like the people we are used to interacting with. Most of our relationships are undergoing some form of transition or adjustment, and that process tends to be challenging.

Finding role models or others who have successfully navigated these challenges (or are trying to sort it out too) is often comforting, and these others are often in the position to help and support us in ways our loved ones simply can’t at the moment.

These groups are also often a great information source. Hearing from people who share your diagnosis can help to either affirm that you’re correctly diagnosed (similar stories and experiences) or give you clues to help lead you toward a correct diagnosis if you are misdiagnosed.

For example, participating in FND groups helped me feel much less alone as I adjusted to my diagnosis, but I also heard from folks over the years who had been misdiagnosed as having FND when they actually had Lyme disease, Ehlers Danlos syndrome, arachnoid cysts, or various rare genetic disorders that their doctors didn’t think to test for.

These groups help you find potential new friends who understand, as well as potentially giving you insights into your relationship challenges, physical and emotional challenges, and of course the medical aspects of your condition, such as potential treatments, appropriate tests, and possibly what to look for in a medical professional.

What risks are there in joining these groups?

While at least most of these groups are full of well-intentioned people, there is always going to be some percentage of people who have absorbed bad information or have poor coping skills.

Many people with chronic conditions face times of desperation. There can be others in these groups (especially if the moderators aren’t careful) who try to take advantage of this desperation.

You want to keep an eye out for scams or manipulative people who push others into decisions that can cause long-term damage, either physically or mentally/emotionally.

There also are often people who are stuck in a state of victimhood and aren’t able or willing to improve their situations.

These folks sometimes end up clinging to others for emotional support or just whining a lot on the channel, which can be emotionally exhausting.

Especially early in the journey, there may also be a sense of embarrassment or shame about your diagnosis, and at least some of these groups may be visible on your social media profile.

I’m unconcerned about this, but I know that your diagnosis may be something you don’t want people to know about, so it’s helpful to be aware of what others may be able to notice about your social media participation.

Generally, these groups are aware of this concern as well, and handle it in different ways. On Facebook, these groups are generally “private” groups, so that while others can see your membership, they don’t see anything else.

Still, the fact that I’m an active participant in FND Hope’s Functional Neurological Disorder discussion group will tell others that I’m at least interested in the condition.

This is likely part of why there are a fair number of medically centered spaces created for these conversations—so that those folks who aren’t comfortable having their diagnosis visible in that way can still potentially find others who understand.

Keeping yourself safe in discussion groups

My first and most basic suggestion is to recognize that you are in a group of relative strangers. Just be smart about it and don’t go sharing too much identifying information.

Nobody needs to know what street you live on or what your phone number is. Sometimes, it is useful to share what state, county, or city you live in if others live nearby or know doctors or treatment programs in your geographic area.

Sometimes it’s really helpful to share your stress or concerns with the group, but do your best not to share names (especially not full names), or other details that could be easily looked up for additional information.

I may mention that I have sisters, but not give their names, or that I have nieces and nephews but not mention their ages, genders, or names. Things like that.

Again, it’s not that the folks in these groups are untrustworthy; it’s just that having your information be somewhat anonymous protects you in case somebody in the group has ill intentions.

You may end up sharing information about medications you’re taking or doctors you see with these groups as part of the conversations.

What’s really important to remember is that each of us has our own body chemistry and medication tolerances, so just because a medication is helpful for another person who shares your condition doesn’t mean that it’s going to work for you.

However, learning what helps others does give you a starting point for further conversation with your doctor.

One of the most important things for your health is to put everything suggested on these sites up against a logic test and up against available scientific research.

Support sites for parents of autistic children have advised parents to use bleach in and on their children, to give you an extreme example of really bad advice on support sites.

Any suggestions you read about, no matter how many people on that particular site swear by it, should be compared to other resources to see if it’s actually safe and helpful.

Be aware of group politics

Because most of these groups are either created by an individual or are volunteer-based, there are often emotional undercurrents, groupthink, or other expectations that may not be obvious initially.

For example, I joined a group that I thought was focused on healthy eating, only to later learn that they were primarily composed of people in recovery from a variety of food-associated disorders.

I blithely wrote about eating healthier and my desire to ensure that my partner was along for the ride, and got scolded for looking at other’s plates and for trying to control another person’s food decisions.

I was kicked out of the group shortly after for that “sin.”

There are a lot of groups on Facebook in particular that can vary hugely in quality and participation.

Some groups have very active moderators and admins who keep things running smoothly (or rule with an iron fist) and other groups are severely undersupervised or get overrun with people who can’t stay on topic or who bully or mock other members.

I advise that you spend some time looking at how people interact and what messages and suggestions are being spread.

Read back in the comments and see if the moderators are active, if people seem respectful or abusive, and look at what options they endorse for treatment.

Sometimes, there’s a pretty strict set of expectations for behavior and sometimes it feels like the wild west. I recommend proceeding carefully and lurking for a bit before you volunteer too much.

If something feels off, or there seems to be a lot of spam or messages that make you feel uncomfortable or unsafe, it’s probably not the right group for you.

Keep looking until you find a group that feels right to you—and that’s the space that gives you the best chance of finding the right supports for you.

Remember that discussion groups don’t attract everybody with the diagnosis

Most groups focusing on specific conditions are going to be especially attractive to people who are newly diagnosed and people who are having a really hard time managing their condition.

For example, participants in FND Hope’s discussion group are usually still managing their FND symptoms.

The people who only briefly had symptoms, or who recovered completely usually don’t stick around, while the people who were more severely impacted or haven’t found a good way to manage their condition are going to stay.

Recognize this, because I’ve seen a lot of folks comment inside the FND groups that they are seeing comments from people who’ve had it for a long time and don’t seem better, but their doctor is telling them that they have a good chance of improving and possibly going into complete remission.

Both things are true. It’s just that the people who got better have moved on and aren’t in the group anymore.

Whatever condition you have, remember that these groups only contain the people looking for more information on their condition, not everybody who shares your diagnosis.

This isn’t a random sample, and the stories you read aren’t the prediction for your future, but the individual experiences of others who share your diagnosis.

Using these discussion groups to help you manage your situation

Once you’ve found a group you feel comfortable in, it’s time to do a deep dive and make some powerful connections.

Share experiences you have—symptoms, familial interactions, whatever you’re struggling with or struggling to understand.

Often, whatever you share, somebody else in the group has experienced something similar and is ready and willing to share their experience, empathize with you, and maybe offer some suggestions.

This is a great space to potentially develop new friendships (as you’re meeting others dealing with similar challenges who can truly empathize) to learn more about how your condition works, and to get leads on possible new and powerful treatments to discuss with your doctor.

Also, if you are having a hard time finding the right doctor, these sites or groups can often help you with that search as well.

You are going to need to be selective on what advice you follow, and on who you listen to.

Also, these groups often have rules about how and when you can private message others—generally it’s something simple like “ask first,” but just be aware because you don’t want to be booted for not following a simple rule.

As people make suggestions, ask them where or how they learned about the idea/doctor/symptom and, whenever possible, get the associated links so that you can have a deeper understanding—and make sure it applies to you and your situation.

It’s very useful to get these additional perspectives and learn from others’ research. Just make sure each step of the way that the information is scientifically accurate (and/or an alternative therapy that’s unlikely to cause harm to you—including financially) and is applicable to your situation.

Any major change in lifestyle should also be discussed with your doctor so that you can integrate it into your treatment plan and potentially be advised on particular symptoms or symptom shifts to track.

The more precision in your observations, the more likely you are to get useful information to help with managing your condition.