Your Chronic Illness Community Could Be Keeping You Sick (Here’s Why, and How to Change It)

Photo by Alexis Brown on Unsplash

After weeks, months, or years of not feeling your best, you leave the doctor’s office with the reason in your hands. Your pain now has a diagnosis. You go home and Google it all night, then start posting about it. You find a community to help you through it.

This community helps you, shows you that you’re not alone. It has helpful resources, comforting stories, and even memes. You feel like you belong in this community. Soon, you start to rely on them too.

The Slow Shift Away from a Recovery Mindset

You immerse yourself in sharing and sympathizing, and you finally feel seen. Then, the next time you go to your doctor appointment, you are less open-minded to her solutions. Why?

Maybe, it’s because the solutions are wrong for you. Or, maybe it’s because you don’t want to feel better. On a subconscious level, you have started to rely on your illness community. If you start to feel better, then you won’t belong. And you might find yourself as lonely as you were before you found them.

Illness is Isolating…

Before your diagnosis, you already began to lose friends. This can happen in many ways. Your chronic fatigue or migraines keep you trapped in bed. Your special diets make going out to eat embarrassing and stressful. Your anxiety puts a damper on socializing or your hair loss hurts your confidence.

You stop being available, so your friends stop inviting you. A few keep checking in, but it becomes easier to avoid the situations than to try to explain yourself. When you needed friends the most, you slip into isolation.

Then, you find people who share your diagnosis and understand you. You feel seen again. You don’t have to explain yourself, they already know why you’re struggling. When you need to complain without judgement, they are there to listen. When you’re discouraged, they’re in the trenches with you. They save you from feeling alone.

…But Recovery Can Be, Too

But, when you find solutions and start getting better, you are no longer suffering with them. They might celebrate with you momentarily, but then you become almost annoying. Those still hurting want to commiserate, so they drift away from you. Over time, you are unwelcome in the group of those who are still sick.

You find yourself without friends in either place. Your old friends moved on and your new friends no longer think you can relate. Depending on your stage of life, it can feel impossible to find a new group to welcome you.

Loneliness or Sickness, Or Are They the Same?

Isolation can be as paralyzing as sickness. According to the Campaign to End Loneliness, loneliness can be as bad for your health as smoking 15 cigarettes a day. In fact, loneliness increases your immediate threat of death by 26%.

Running away from this can cause you to do some irrational things. Things like calling an ex, overspending, or filling the void with food or pornography. It can also make you close-minded to health solutions that would cast you out of your illness community.

What is Your “Illness Identity”?

When you find out your diagnosis, your perspective of yourself can shift. This can be good, as you realize you are not lazy or anti-social, just sick and tired. It can help you separate qualities you developed and hated from who you actually are.

But, it can also work against you. When you spend most of your time interacting with others who are chronically ill, how you define yourself can lose dimension. Instead of “having an illness”, you can start to think of yourself as the illness.

What Happens When You Lose Hope in Healing

This is an easy thing to slip into, and understandable after your hardship. But too often you can become trapped in this space. As you learn about how many others have struggled with your diagnosis, you can stop believing in recovery. If you’re not going to recover, then you are just a diagnosis now, aren’t you?

Next thing you know, everything that defined you, the things you were hoping to get back after beating your illness, become part of the “old you”. You think of yourself like a play with two acts, and there is no return to Act One. You build a new identity, with sickness, instead of your own spark, at its core.

Join the Community, But Set Boundaries

So, does this mean you shouldn’t find a support community as you navigate illness? Of course not. It means that setting boundaries first can help the community help you.

To set those boundaries, pay attention to how the community affects your mood and mindset. If a certain account brings you down, mute it for a while. Choose groups or accounts that focus on positivity and empathy. Only check in on good days, when you can encourage others rather than let them depress you.

Better yet, connect with fellow chronic illness warriors in your local community! By connecting with people in your vicinity, you can swap suggestions about doctors or stores, meet in person instead of online (which is more likely to leave you feeling better), and do something proactive. You can commiserate while having a positive experience.

Remember You Are More Than Your Diagnosis

As hard as it is, do not let go of the things that defined you before your diagnosis. If you cannot enjoy certain things the way you used to, find ways to still involve yourself in them. That may sound depressing, and at first it may be. But, it will not be as depressing as losing that part of your life.

Hold onto the people that matter, too. Your impulse may be to withdraw from everyone, but fight it. Give your friends and family the chance to be there for you, to be part of your support community.

It is important to maintain the good relationships you had before your diagnosis. Those people know you as more than your illness. They can help you remember you are more than symptoms, supplements, and prescriptions.

It’s Okay to Be Okay, Even If You are Still Sick

Whether you are on the road to recovery or still in the thick of flare-ups and bad months, it is okay to be okay. If you have the right people in your life, are keeping up your spirits, and holding onto “you”, you can step out of your illness community. Some relationships are not meant to be there forever.

Lean on them when you need them, and do your best to return the favor when you are able. But remember: your healing is more important than their opinions. Make genuine connections when you can. If you do, your community will have gifted you true friends through the ups and downs of chronic illness.

But, if your chronic illness community is keeping you sick, then it’s time to say good-bye. Protect your own healing journey, and look for a better support system. Once you have, you may find your recovery starts to look a little more possible.

A note from the author: Not all chronic illnesses are the same. Some do not have hope of complete recovery. But, all of those experiencing sickness deserve a community that supports their ups and downs in the journey. And all those who struggle with chronic illnesses deserve to define themselves by something other than their diagnoses. They are all so much more than sick.

Owner and Copywriter of Open Doors Media, LLC. Entrepreneur, Working Mom, and Overcomer of Chronic Illness