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Living with a Chronic Illness Can Be Isolating — These Tips Can Help

Sex and Relationships

November 12, 2021

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jacobia dahm/Getty Images

jacobia dahm/Getty Images

by Lauren Selfridge, LMFT

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Fact Checked by:

Jennifer Chesak, MSJ

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•••••

by Lauren Selfridge, LMFT

•••••

Fact Checked by:

Jennifer Chesak, MSJ

•••••

•••••

Growing up as a particularly social kid, friendship and connection with others have always been important aspects of my life.

Joking, talking about nothing of importance, and processing the deeper stuff are all part of what I love most about being on this earth.

Today, I’m an extroverted psychotherapist who enjoys a mix of social connection and solitude to fill my self-care cup.

That balance between social time and alone time has become more pronounced as I’ve learned to live with multiple sclerosis (MS) over the past 6 years.

In the beginning of my chronic illness journey, an unusual-for-me dynamic showed up in the midst of flares and difficult symptoms: my outgoing, socially connected self became more inward, quiet, and overwhelmed.

I stopped reaching out to friends as much as I normally would, and at first, I didn’t understand why.

Over the years and through countless conversations with others in the chronic condition community, I’ve come to find that it’s fairly common to go through periods of aloneness and loneliness when you live with challenging health conditions.

There is one dynamic I’ve noticed in myself and others that can play a role in isolation: experiencing emotional stuckness around when, how, and whether or not it even makes sense to begin reaching back out to our social networks.

I’d like to share some tools to help you manage these inner dynamics in a way that may allow you to find the right balance of social connection in your life.

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Give yourself permission to feel different than usual

Whether you consider yourself to be on one end of the introvert-extrovert spectrum or somewhere in the middle, it’s likely that managing complicated health symptoms can impact your desire and energy to reach out to the people in your life.

That’s OK.

It makes sense to feel less energy and motivation to connect with others when you’re going through something big with your body.

Even if you’re someone who tends to reach out to friends when things are tough, you may feel a little surprised to see that you just aren’t doing that right now.

When I’m in the midst of a challenging period with my MS, time seems to shift. The minutes and hours feel like they drag on. There’s not as much contrast or differentiation from one hour to the next, so it’s hard to feel like any time has gone by at all.

It’s easy for days to turn into weeks of little-to-no outreach to friends.

A major shift in symptoms can feel disorienting and disappointing. I sometimes find myself wishing for the kind of daily life I had before MS and wanting to take part in activities that require more energy than I currently have.

Lots of emotions show up: sadness, fear, loneliness, anger, annoyance, and sometimes even a sense of numbness to the intensity of it all.

In periods like this, I’m so busy managing my emotional experience and dealing with decreased energy that the last thing on my mind is socializing with people.

Even though I love processing my feelings with friends, if I don’t have the bandwidth to do so, reaching out to them feels more like a chore than a help.

If we’re not careful, it’s easy to slip into a mental space of self-criticism when our needs, priorities, desires, bandwidth, and behaviors shift.

The truth is, we are ever-changing people. We’re supposed to feel different ways on different days.

Instead of giving yourself a hard time for having low motivation to connect with others, spend a little time identifying why it makes sense that you don’t currently feel like it.

Giving yourself a little compassion can help validate the experience you’re going through and keep you out of a shame spiral that has you feeling stuck.

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Know that you’re not meant to do this alone

Living with chronic conditions and managing difficult symptoms means we likely need even more connection and support than we may realize.

As much as it can be nourishing to have alone time and space to just be, we aren’t meant to do the entire journey of life, or chronic illness, alone. We’re wired to live in connection with one another, to be impacted by each other, to feel nourished by others’ presence, and to give and receive help.

Balance is key. It’s OK to give yourself room to be on your own — and it’s also important to notice when solitude has the potential to turn into loneliness.

Sometimes, loneliness has its own snowball effect. If we haven’t reached out to others in a while, it can feel less and less easy to do so as time goes on. And so we go longer and longer without connection and get more and more lonely.

The thoughts that can show up during a stuck period may sound something like:

  • “I’ve been away from my friends for so long, they’ll probably be mad at me when I finally reach out again.”
  • “No one really gets what it’s like for me anyway.”
  • “It takes too much energy to talk about what my life is like right now.”

As we repeat these thoughts in our minds, our feelings of disconnection can become even more entrenched.

We know we need to reach out, but we can think of so many reasons why it isn’t easy, why it won’t make a difference, or why our loved ones won’t be responsive or accepting.

Keep in mind that this stuckness is simply a practiced thought pattern that becomes more convincing over time. If we listen to these thoughts without questioning them, we may be convinced that they’re universal truths.

The key is understanding that the inner voice of stuckness doesn’t have to be the part of you that calls the shots. The stuck pattern is one part of the mind, but it’s not the whole you.

Because its message is so convincing, it’s important to take some small steps in exactly the opposite direction of its advice.

You don’t have to cut off the voice of stuckness and isolation, but you can offset it with these reminders:

  • “I’m not meant to do this alone.”
  • “It’s OK to take small steps to reach out.”
  • “I don’t have to do it perfectly.”
  • “My experiences are important to the people who care about me.”
  • “I deserve love and support.”

Take small steps toward connection

Reigniting the process of reaching out to others won’t necessarily feel easy if you’ve been immersed in a cycle of stuckness. That’s why it’s a helpful stretch — it’s something that serves you without necessarily coming easily.

One of my favorite ways to break the cycle of loneliness and isolation is to send a message to one friend and share candidly about what’s really going on.

It might look something like this: “I’m sorry I haven’t been in touch in a while. I’ve been having some tough symptoms lately, and am not really sure how to talk to people about it, or if it will even make sense. So today I figured just telling you that might help. How have you been?”

This is a transparent way of inviting someone into your real, imperfect process. You’re giving them information about what’s happening for you at this moment in time.

The truth is, whether they have a chronic condition or not, your experience is likely to be pretty relatable on some level.

Another way to get connected is to explore chronic condition communities online, search chronic condition hashtags on social media, read chronic condition blogs, and listen to chronic condition podcasts.

Something powerful happens when we begin to read and hear about others’ experiences with health challenges.

Even if their experiences aren’t identical to our own, we start to feel less alone and our lived experiences feel more valid and understood.

I have a few chronic illness buddies whom I’ve met through online communities. What’s special about having friends who also live with health challenges is that they “get it” without me having to explain nearly as much.

We give each other lots of grace and understanding when reaching out feels especially tough, because most of us have been there.

It can feel supportive and reassuring to know that we have a few people in our lives who are in this shared experience with us.

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Remember that others feel the same way

Even when you feel isolated, you’re in the shared company of many others who may be feeling that exact way in this very moment. Keep in mind that there’s nothing wrong with you if you’re struggling with reaching out.

It’s important to give yourself some care and understanding around why you’re feeling what you’re feeling, give yourself some intentional nourishing thoughts to support your next steps, and take small actions to reconnect with others.

Note: If you’re having feelings of hopelessness, self-harm, or suicide, know that most people feel this at some point in their lives. Many don’t talk about it, but it is actually pretty common.

If you or someone you know is considering suicide, help is out there. Reach out to the National Suicide Prevention Lifeline at 800-273-8255. If someone is at immediate risk of self-harm, call 911 or your local emergency number and stay with them until help arrives.

Being a human can be tough, and we never have to do it alone.

Article originally appeared on May 10, 2021 on Bezzy’s sister site, Healthline. Last fact checked on August 10, 2020.

Fact checked on November 12, 2021


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About the author

Lauren Selfridge, LMFT

Lauren Selfridge is a licensed marriage and family therapist in California, working online with couples and people living with chronic illness. She hosts the interview podcast, “This Is Not What I Ordered,” focused on full-hearted living with chronic illness and health challenges. Lauren has lived with relapsing-remitting multiple sclerosis for over 5 years and has experienced her share of joyful and challenging moments along the way. You can learn more about Lauren’s work on her website or follow her and her podcast on Instagram.

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