Time to talk: why community is so essential for those living with chronic conditions

·7 min read
Social connection is critical for our physical and mental well-being. We chat to an expert for tips on how to best find community and manage your social life when you have a chronic condition. (Getty)

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As human beings, we crave social connection and share an understanding of the power that community offers when it comes to helping us feel supported, understood and listened to. But the benefits of community extend far deeper than that, too.

Social connection can have a significant impact on health — physical and mental — for everyone, including those living with chronic conditions.

Community and connection play a huge role in helping improve overall mental health, too, decreasing the risk of symptoms of anxiety and depression. This is true for both online and in-person communities.

When you have a chronic condition, socializing can be trickier, especially if you’re having a flare-up of pain or are feeling particularly exhausted. In these circumstances, it can be tempting to cancel engagements or avoid making any social plans at all for fear of having to abandon them — but UK-based, therapist, Natalie Eyre, of Natalie Louise Therapy, who specializes in cognitive behavioral therapy and acceptance and commitment therapy for clients with chronic conditions and chronic pain, has some tips on how to find community and social support when you have a chronic condition.

Find community and support based on your passions and values — not just your condition

The best kind of socializing often starts when you home in on your passions and interests and find others who enjoy the same activities you do. A key component of acceptance and commitment therapy which she uses with clients, involves identifying your values, explains Eyre.

“This means exploring with the client what is really important to them and discovering the type of person they want to be. We then use these values to think about activities that will help them feel fulfilled and live their best life,” she says, using the example of enrolling on a free online course which has a forum, too, so you can connect with others through the chat while learning something new. This could be something that appeals to someone whose values are related to connecting with others, while increasing their knowledge of a particular topic.

Understanding what you’re looking for from social engagements and community by taking control of how you choose to engage with people can also help you figure out where to expend your energy, whether you just want someone to listen to you or need to find practical solutions for an issue related to your condition. Perhaps you’re hoping to tap into a passion or find some escapism through your social life? Since the pandemic, the array of virtual communities available for indulging your hobbies, learning new skills or expanding your horizons — whether you join a virtual book club or try online crafting sessions — is robust and allows you the opportunity to connect with those around the world, as well as closer to home.

Eyre also recommends finding support groups “centered around what is meaningful” to you as a person, so recognize what you’re looking for from a group. That might be listening to others’ experiences, sharing your own or directing your focus towards a passion to take your mind to what you most enjoy.

Community can exist anywhere (even on your road)

The surge of online support and the ability to connect with like-minded folk through social channels has been hugely beneficial for many looking for community at their fingertips. Social media has amplified the voices of those with chronic conditions, so you can communicate with someone who knows exactly what you’re dealing with — even if they live thousands of miles away. Many find that social media groups and accounts are also invaluable for providing motivation, tips and support.

Online support groups can feel overwhelming to some, who might prefer face-to-face meetups. If you want to find others who may share common experiences because of their chronic health conditions, then getting in touch with the patient organization specific to your chronic health condition is generally a good first port of call, according to Eyre. She recommends finding a group with a moderator to monitor what’s being said on forums and live chat rooms.

“A sense of community can be created through talking to others, for example saying ‘hi’ to neighbors or people you walk past on a dog walk. Doing this regularly can mean it gets easier to continue doing it and you eventually make connections to people you wouldn’t have known otherwise,” explains Eyre.

It can help to talk about your experiences

Community and friendship are key to making us feel good because they provide an opportunity and outlet to talk, whether we’re celebrating something we feel pleased about or mulling concerns over an issue we have. Talking and sharing may not come easily to some of us, but it’s important not to keep thoughts and emotions bottled up inside until we feel overwhelmed.

“Talking things through can ease this feeling,” explains Eyre. “Another advantage to talking things through is that sometimes we can see things in a different way. From my experience, the biggest advantage to talking and sharing stories is that people report they do not feel so alone. Living with a chronic condition can be extremely difficult and isolating, therefore speaking to someone who ‘gets it’ can be validating.”

In the absence of being able to connect in a timely manner with health professionals, community connections play an important role, whether you’re talking and sharing within groups or taking a solutions-focused approach, learning coping strategies and improving on things that aren’t working.

Change your patterns of thinking to help you socialize

We all have times when socializing feels too overwhelming, but that can be especially true when we have chronic conditions and anxiety about what we’re able to take on socially because of worries that we’ll have to reschedule or cancel plans. Eyre says it’s common to have “all-or-nothing thinking,” the tendency to hold back from doing things you want to because you’re worried it won’t work out.

“Something I hear a lot from clients with chronic conditions is, ‘I might be too unwell to go to the party/dinner/day out so I will say “no” or won’t bother planning anything,’” Eyre says, adding that “other anxious thoughts that stop clients being social are things like, ‘I won’t be able to cope if I am unwell when I am out’ or, ‘I can’t let people down by canceling so I will just tell them no.’”

If that sounds familiar, Eyre advises making a plan A, B and C to give yourself some backup options. If plan A is going to dinner with friends, plan B might be meeting for coffee if dinner feels like too much, while plan C could involve asking the friend to come over if you’re too unwell to leave the house.

“That way, the plan is flexible, and the individual is still being social, just on their terms, depending on how they feel on the day. I also help people feel more confident at communicating what they need to others. Being able to tell friends and family that they do not feel up to doing something, but still want to see them, can make such a difference,” she adds.

If a social group isn’t working for you, then it’s OK to leave it behind

Our social needs are always changing and evolving, depending on our life circumstances, so staying flexible and open-minded when it comes to our social and community needs is important. Eyre urges people to reflect on how each group experience has made them feel.

If certain social interactions lead to feeling deflated or invalidated, she recommends trying something else, whereas if you feel uplifted, you may have found the right group for you (right now).

From This is Living:

For more information and resources for living with a chronic condition, check out This is Living Today