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Let's talk about online health groups.
Research shows that many people use online health groups and social media as a main source of health information.
In fact, this Pew Research article shares the following related stats:
77% say they began at a search engine such as Google
13% say they began at a health information site like WebMD
2% say they started their research at a more general site like Wikipedia
1% say they started at a social network site like Facebook
Therefore, the topic of using online health groups for food allergy information-gathering and support inevitably comes up in my work with clients, as well as in my community presentations.
Sometimes the topic comes up because someone is sharing something with me what they've learned in a food allergy group. Other times I bring it up to help someone evaluate whether the online groups they're a member of are impacting their food allergy management approach and/or food allergy anxiety levels so we can assess whether the groups are helpful or not for achieving their goals.
Are Online Health Groups Helpful?
No matter why the topic comes up, when someone asks me if online health groups are helpful for those managing an allergic condition, my standard response is:
Yes and no.
You see, whether online health groups are helpful to someone or not depends on a lot of different factors, and therefore, there's no definitive answer to be given.
Rather, everyone needs to determine on their own how the online health groups they're part of impacts their food allergy and anxiety management.
So, how can someone determine if the groups they're engaging with are helping or hindering their food allergy and anxiety management?
6 Things to Consider to Determine if Online Health Groups Help or Hinder Your Food Allergy Management Goals
Know Each Group's Theme.
Each group tends to have its own theme and purpose. Maybe it's an allergen, age, location or topic-specific group.
Make sure to identify the focus, theme, and goals for each group you join so that you have accurate expectations for what you'll experience in and get from the group. If you notice that you feel more unsure, overwhelmed, and anxious each time you visit the group, it's likely not one that you need to be a member of.
Know Your Goals for Being in the Group.
Speaking of goals, think of what you'd like to get out of being a member of each group. Are you looking for support? Evidence-based information? Tips and guidance from those who have managed allergies longer than you?
Knowing your own goals will help you evaluate which groups are the best fit for you, and therefore help rather than hinder your food allergy and anxiety management goals.
Make Sure There's a Balance Between Information and Support.
Ideally, online health support groups will have a balance between anecdotal experiences and evidence-based information. Anecdotes and personal stories can be useful because they share a sense of common humanity - or the feeling that you're not alone in your experiences.
However, especially when emotionally-charged topics are explored, it's important that evidence-based information is also present or easily accessible, as this can serve as a grounding anchor. Without that evidence-based information anchor, it's very easy to over-generalize and catastrophize solely based on others' experiences.
Therefore, if you find that you're often feeling more anxious or upset after visiting a particular online health group, evaluate whether the group offers enough evidence-based information to help you stay grounded when others' experiences and input shakes you up.
Know Where You Are on Your Own Allergy Journey. Knowing where you are on your own food allergy journey helps identify which groups may be most beneficial for you in the present moment.
Your needs when initially diagnosed are likely not the same as your needs after a few years of experience. You also don't need to be in groups focused on future ages/stages unless you're gearing up to enter them, as this can induce more anxiety and worry than you need in the present moment. You can always join them in the future...when you actually get to that bridge.
Additionally, as you gain more confidence navigating life with food allergies, consider staying in online health groups as an experienced mentor to members who are just starting their journey. Sometimes giving support back feels just as wonderful as receiving support.
Be Mindful of Your Emotions (and Others'). Support groups, especially ones pertaining to topics close to the heart such as life-impacting chronic conditions, may be filled with many emotions - both hopeful and grief-focused ones.
Being aware of your own and others' emotions when interacting with group members goes a long way. It can be helpful to take a moment before responding to posts in order to assess what the person is asking or sharing, and what the goal of your reply will be rather than quickly responding based on raw emotion. On the same note, those who are responding to your posts may be doing so from raw emotion, too. Also keep that in mind that words shared online can easily be misconstrued or taken out of context.
Therefore, if you observe that some groups are filled with lots of intense emotions, consider whether that feels helpful or unhelpful based on where you're at today and what you need to help you navigate life with allergies the way you want to.
Consider That Less Might Be More. Is there an ideal number of online health groups to join? Nope!
Initially, you may join many groups because you want to absorb as much information as you can, but as time goes on, you'll learn which ones you prefer.
Online health and support groups are more about quality than quantity - so don't feel you have to be a member of any and all food allergy support groups! In fact, being a member of tons of groups may actually fuel the stress by exposing you to TOO much anecdotal information without enough evidence-based information to balance things.
Therefore, narrowing it down to a handful of trusted groups that you feel are helping you live life the way you want to is better than automatically requesting to join all relevant groups.
Where to Find Evidence-Based Information and Support
A great place to start is your board-certified allergist. In fact, I also encourage you to discuss with your allergist what you've learned from online health groups so that together, you can decide what information is helpful or hindering your food allergy and anxiety management.
Beyond your allergist, you can visit the following resources for evidence-based food allergy information and support: