Lana Barhum is a legal assistant, patient advocate, freelance writer, blogger, and single parent. She has lived with rheumatoid arthritis and fibromyalgia since 2008 and uses her experiences to share expert advice on living successfully with chronic illness.
Research indicates that people with chronic illness don’t participate as much in social activities and instead prefer private time, normally spent alone. However, people with chronic illness can benefit from having a healthy social life, according to a study of 250 adults published in The Journals of Gerontology. In the study, older adults who continued to participate in social activities, even after limitations made it more challenging to do so, had a more positive outlook on life than those who weren't participating.
This doesn’t just apply to older adults—young adults aren't participating either. In fact, many are frustrated and angry about their inability to be socially and physically active.
Sometimes, loved ones will perceive people with chronic illness as lazy or reclusive. But the truth is, you worry that social participation might trigger fatigue and other symptoms that could persist for days or weeks. Moreover, when you don’t feel good, you may prefer alone time and may find yourself withdrawing from social activities.
Your healthy loved ones and friends may want to understand and support you, but most still have social lives and it is difficult for you to get involved. Despite your obstacles, however, it is important for you to have a social life—dealing with your condition and its unpredictably isn’t something you should go at alone.
How is maintaining a social life possible when you are always sick, tired, and in pain? Here are some things to consider when managing your social life and chronic illness.
The reality of chronic illness will make it clear which people will truly be there and which ones won't. Remember to cherish the people that stick around—the ones who are willing to stop by and hang out on the couch with you and the ones who will invite you even though you may have to decline or cancel. It takes a special person to stick around and be a real friend; take time to appreciate your true friends.
The idea that our illnesses have control of our social lives is paralyzing. But we should never allow illness or challenges to define our lives. You are more than the label that life's obstacles place on you. Go out and enjoy your life and the people that matter at every possible opportunity because after all, life is too short.
Make sure you are honest with friends about your limitations and potential flare-ups. Ask them to understand when you have to cancel but to continue to include you, as there will be times when you are able to participate. You can also invite friends and suggest activities that are fun for everyone but likely won't trigger a flare-up.
It might seem like a weird idea, but people with chronic illness should have two sets of friends, those with chronic illness and those without. It’s important to have people in your life who understand day-to-day struggles and who you can vent to. Your second set of friends should help you to feel separate from your illness and limitations so that, every once in a while, you get to feel like everyone else.
There will be times when friends and family will be surprised when you have to cancel plans. They may have spoken to you a few hours earlier and you were feeling well and upbeat. But then a flare hits and you end up in bed. Let yourself cancel plans when you have to and don’t feel guilty for doing so. Last minute cancellations do happen and your true friends love you enough to understand your limitations.
Living with chronic illness and its limitations can make you feel helpless and lonely. But, of course there are times when you can enjoy life. While you have little control of your diagnosis and symptoms, you can still manage your responses. Being chronically ill doesn't have to stop you from leading a fulfilling life. Ultimately, it is your life to live. Choose to be an active participant in your social life as often as your health allows and don’t lose yourself in all the what-ifs that chronic illness brings.
The Power of Social Networks for Health
Loneliness and Disease: How Feeling Isolated Could Lead to Health Problems
The Value of Arthritis Support Groups
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