When I was first diagnosed with several chronic conditions, I felt lost and alone. It felt like nobody in my life understood what I was going through.
I had a lot of well-meaning friends, but at the end of the day they just didn’t have the background to understand the magnitude of what I was experiencing.
So, to feel a little less alone, I turned to online support groups.
On Facebook, there are hundreds of groups for those suffering from chronic illnesses. I joined the groups and started reading about others’ experiences. Members of these groups got me. They could relate to what I was going through. While our symptoms may have been different, our experiences often looked similar. We each were facing some level of debilitation. Chronic illness was changing our lives.
After a while, though, being part of Facebook support groups began to grow draining. I’d see posts pop up in my newsfeed when I was just trying to think about other things. Sometimes, the discussions would bring down my mood. What, at first, was a place of support seemed to turn into a place that drug me down.
I thought about leaving all of the groups. I thought about not talking about illness anymore and just avoiding the subject altogether. But, still, I felt this sense of calling from God to connect with others who are suffering to help bring a little hope. It didn’t make sense for me to completely leave the groups when I desired to help encourage others. It was also good for me to keep learning about what others do for treatment so I can make educated decisions when talking with my doctor.
So, I set some parameters for how I spent my time using Facebook to connect with the chronic illness community. Some of those parameters can be found below.
But first, here are some of the pros and cons about support groups for chronic illnesses. I went through these pros and cons mentally as I tried to determine how I could best engage online.
Here’s a rundown on some good and bad things about being part of online support groups for chronic illnesses:
Chance to connect with others who have similar conditions
Not everyone has someone in real life to connect with. I didn’t have people in my everyday life that completely understood what I was facing, so having people online was a relief when I felt isolated!
People who have treated similar conditions as yours have valuable insight that they are happy to share! You can find advice on anything from what brand of supplements to purchase to what doctors are good. In many of the groups, you can pose a question and others will chime in to help.
Library of resources and articles
A lot of groups have a resource library with files of information on your condition. If you scroll through the page, there’s access to blog posts and articles that others have shared to offer value to the group. I love finding all kinds of good nuggets of information!
Chance to meet people who live near you
On several occasions, I have interacted with someone in a group, only to discover that we actually lived close by. I’ve even met up with some of them in person after first connecting online. These kind of connections are so cool to me!
Human connection without having to leave home
At many periods of time with chronic illnesses, I was not able to leave my house, let alone my bed. It wasn’t just that I needed someone who understood me, but I needed some sort of interaction. When insomnia was bad and sleep was impossible, I could go online and interact, feeling a little better because I had interaction. If you’re in a similar place, online support groups may provide a great way for you to get interaction.
While there are a lot of upsides, there are also some downsides…
Exposure to negative thinking and complaining
Part of my healing journey has included taking thoughts captive and speaking truth to myself when I am struggling with severe symptoms. Not everyone in chronic illness support groups sees life the same way I do. So, the exposure to too much negative thinking can be harmful for me. I absolutely think it’s helpful to talk about what we experience for the sake of developing relationships with mutual understanding, but when the conversation goes too far into the realm of complaining, it can be detrimental.
Unfortunately, there sometimes seems to be a who’s sicker than who comparison game that goes on in chronic illness groups. There’s also comparison with who is treating the correct way and getting to a place of stability faster. I’ve seen members of groups post success stories, only to be hit with mean, negative comments about how it isn’t possible. The truth is that we are all different and our bodies will respond to treatment differently.
When you’re a member of multiple groups on Facebook, they pop up in your newsfeed. If you comment on a post, you get notifications when others comment or reply to you. This can all be changed in the settings, but the automatic settings can make your social media experience a little overwhelming! When your mind is constantly being bombarded with messages (especially if they get negative) about illness, it is hard to keep moving forward toward healthier days.
Differences in opinions
If I don’t agree with someone in a support group, I will let them carry on with how they feel. Not everyone is respectful of others’ opinions, though. This makes it challenging to be involved in some groups. I see a lot of rude comments made when people do not agree with each other. Hurtful words are said, which doesn’t make participation beneficial for all involved.
So, what can we do about it? Are support groups beneficial?
I am still of the mindset that support groups are beneficial, but I only use them sparingly. I also try to be involved in groups with like-minded individuals, so I often seek out the faith-based groups.
Support groups have been a crucial part of my journey toward better health, so I do value them. I just don’t use them as much today as I did several months ago. I also turn off a lot of notifications and hide groups from my newsfeed. When I want to engage, I go the group and participate. When I don’t, I just go about my day seeing pictures of kittens and the amazing meals my friends cook. ;)
If you’re looking for more support in your journey with chronic illness, I’d love to give you a free copy of my eBook, Finding Hope Through the Fog. You don’t have to walk this road alone.
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- The story of my battle with chronic Lyme Disease
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