These are the ways I've found community even as a chronically ill, mostly house-bound woman.

Navigating Loneliness: Finding Community in Chronic Illness

Lately I’ve been mesmerized by the passion fruit vine I discovered growing along our fence. I use “discovered” in the sense that I saw the vine when we moved in, but only could tell you it was pretty and green.

Let’s just say that I am a wanna-be green thumb who hasn’t quite achieved more than beginner’s status.

If you follow me on Instagram, you saw when these beautiful passion flowers appeared several weeks ago. Soon after, tiny pods began to grow. I did a bit of research and SURPRISE: we have a vine covered with baby passion fruit!

I walked by that vine for MONTHS, you guys. To me, it was the same old vine every time. A beautiful piece of greenery in the yard, and one that I enjoyed.

I didn’t expect much, other than that the vine would be there to give me a pretty backdrop from my view on the front step.

Loneliness has been the backdrop to illness for me. It’s not pretty, but just as I viewed the vine for so many months: it’s just there.

It’s come with the territory of living with a disease that few understand. Combine that with being housebound and often physically unable to have visitors and this gets even more complicated.

That first year of illness felt brutal for me. I couldn’t enjoy community in the ways everyone else was able to, and so I (and my husband) naturally began to fall out of view of many of those around us.

Our lives were turned upside down by my sickness. And in a time when we needed friendship and support, we struggled. Our situation and needs/ability as a couple didn’t fit into any traditional community molds.

Many of my long-distance friends have been my rocks. Friends from childhood and college that have supported and loved me from afar. Through texts, care packages, fundraising, listening and learning about my illness – they were there. In spirit and love, they endeavored to be beside me.

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New local friends became family, bringing occasional meals or picking up groceries. Offering their help, kindness and friendship along the way.

But, the loneliness still lingered.

When Loneliness Lingers: How I've Found Community in Chronic Illness

I remember a day about a year and a half ago that was exceptionally hard.

I was lying on my bed, with the tears flowing over how long it had been since I had seen someone other than Trevin. A combination of terrible pain and flare ups, the busy schedules of others and my own health forcing me to cancel any plans led to weeks of solitude. My spirit was tired and aching.

And oh so lonely.

As I lay there, frustrated and hurting over feeling so disconnected from my former life, I remember the following words playing over and over in my mind:

I am so lonely.
Why don’t you be a friend to others who are lonely?

I am in pain.
What if you were to share your pain and comfort the broken?

I am so limited with this body.
Why don’t you find ways to connect within your limitations?

There are few times in the last few years that I’ve felt God’s nearness or sensed Him speaking to me. But that is one day I felt him, gently there. Nudging me toward finding a way to not only cope with the heavy weight of loneliness, but to connect with others fighting similar battles.

So I began to find new ways to build friendship.

I gave myself permission to look for community within the limitations of my illness. I started to engage more with others on Instagram, follow their stories, support them and find common ground.

Within that community I found new courage to share my story more authentically.

I joined several chronic illness groups on Facebook and began to share my blog posts there, finding so many others who could relate to my struggle so well.

Through those interactions I felt comfort, encouragement, and it’s given me greater purpose as I write.

I’ve even connected with other illness warriors through friends of myself, Trevin and family. Those relationships have been such a gift! We send messages, texts, video and voice clips throughout the week, sharing the raw side of fighting illness as well as things to make each other smile.

They have provided a safe place for me to vent and “just be” when I need it most.

How I'm Coping With Loneliness in Chronic Illness

I’m not saying that all of the loneliness is gone. Some days I cope better than others and honestly it’s still hard. And I’m human.

But I’m learning to navigate this with honesty and an open heart. Through accepting that there are some things I can’t change and looking for ways to cope within my limits, I worry less about having “normal” community.

I embrace the tribe I’ve been given.

Just like the passion flowers that sprinkled my vine with cheer, these friendships near and far have brought light within my loneliness. Purpose and passion within my monotonous, quiet days of fighting illness.

They have reminded me we weren’t meant to struggle alone.

We are here to lean on each other.

So I’ll be here, leaning with you. <3

Have you struggled with loneliness? What are the ways you cope with it or find community?

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  1. Robson Mark De'prose says:

    There has been many times throughout my 6 year battle with depression and now my blindness in my left eye and the uncertainty that my vision in my right eye could go that even with my close family and good friends around me i have felt lonely but not in the sense of having no one around me when I’m needing them but the feeling of helplessness in trying to understand why these terrible illnesses keep plaguing me and so many others out there yourself included but I’m s fighter and i won’t let these bad illnesses take a hold of me and now I’ve beaten my depression and since last December I’m medication free and much stronger in my mind that nothing and know one is going to hurt me again and put me back in that terrible black hole again as for my loss of vision in one eye I’ve excepted that and even if i lose my vision in my right eye I’ll still come out of it fighting and even stronger because life is for living and no matter what obstacles come my way I’ll keep on fighting them and from my knowledge of mental health I’ll beable to help other suffers to get better and fight it now I’m a much stronger smarter person I’m not feeling alone even if my family and friends aren’t around me because for the first time in nearly 50 years I’m really happy an at peace with myself at last and above all I’m not bitter about what I’ve suffered with in my life I’m always going to be a kind caring compassionate person and nothing will stop that. God bless you all robsonxxx

  2. Chelsea W says:

    It’s been hard to juggle a chronic illness and relationships. I lost many friends and a boyfriend because of my chronic disease, I’ve learned how hard it is to MAKE friends when you are always in pain, and I found out trying to date along the way is downright impossible–for me anyhow. I’m really lucky I discovered a few support groups for Lyme disease and chronic illnesses. I have some really GOOD friends who also have Lyme that I have been friends with–one for over 5 years!–who I can always rely on to be there for me and vice versa. It would be nice to not be houseridden and actually be able to go out with friends more (or at all), but I should be thankful I have these beautiful friends at all! 🙂

    • Kami says:

      I feel you and the struggle you mentioned, Chelsea! Man, can it be hard sometimes. I think it’s natural to want to be able to do more, to engage in friendship in more “normal” capacities. I feel it too. For me, I think the two feelings can coexist: grateful for the friendships I have and also aching for health and ability. Sending you a gentle hug today. Thanks so much for stopping in!

    • Kami says:

      It certainly can, Brittany. There are some days I still feel the ache more than the comforting presence of friends/community, but I think it comes with the territory of illness. It doesn’t mean we’re not thankful or aware of what we do have. Just means we are human.

      Thank you for the voice that you are in this community! So happy we have connected.

  3. Alisha says:

    I completely identify with this! thank you for sharing! I’m so glad that you found ways of connecting despite your diagnosis. This speaks to the power of connecting and not allowing loneliness to thrive in a very difficult situation. Hugs x

    • Kami says:

      Thank you for your kind words, Alisha. I so appreciate you relating to this, though I wish you didn’t have to know the struggle. Sending you gentle hugs, girl!

  4. Veronica says:

    Ive felt the same way. Im SO grateful for your blog and the transparency here. Its heart warming. I dont feel so alone with you here. ☺

    • Kami says:

      Aww, I’m so glad. Thank you for reading and sharing such kind words. I’m sorry you have had to know this pain and struggle, too. Sending you a big (gentle) hug. Happy you are here, Veronica!

  5. Valerie says:

    I can identify with all of this so very much! Thank you for such a wonderful article. I am a new reader and can’t wait to read more of your posts. I suffer from Chronic Late Stage Lyme Disease , Fibromyalgia & CFS along with several other illnesses. Blessings, Valerie

    • Kami says:

      I’m so glad you are here, Valerie! Thank you for reading and sharing a bit more of your story. You sure have a full load with your illnesses, girl! Thinking of you today and hoping it is one of the better days for you. Sending you gentle hugs and looking forward to connecting more!

  6. Meredith says:

    When I first became chronically ill, I felt like I had the plague. People disappeared from my life rather rapidly, and even those who have stayed cannot tolerate even the slightest bit of my sharing the struggles I face. They’re scared. I get it. They don’t know what to say, they’re afraid of their own mortality, and some of them are the “If you just look on the bright side…” people. With them, I listen to their issues, I support them, and I say I’m fine. Always fine.

    But here, and in my chronic illness communities, I am REAL. I can be honest about the struggles and the pain, but also about the joy, the gratitude, the little accomplishments – all of it. I never dreamed that social media would bring me some of my closest relationships. I speak to many of these people on a daily or weekly basis, and we laugh together. We discuss things other than our illnesses. But we CAN discuss our illnesses. And that’s so refreshing.

    Am I lonely? You bet. It’s hard being homebound. But here and elsewhere on social media I have found joy again. I have found connection and peace. Not every day. Some days are just tough. But I know I’m not alone, and that is truly a wonderful gift.

    • Kami says:

      It is definitely such a gift to have the online community we have both found. Being able to share honestly, without any judgment or discomfort sensed on the other side? It’s something we all need in the midst of whatever our struggle is. I’ve loved finding others who GET IT. I can share the reasons for why the day is extra hard and it’s a safe place. I’m so glad you’ve found such a great community and friendships through social media, too, Meredith. Thank you for sharing more of your story and heart here! Sending you a big (yet gentle) hug. <3

  7. Karean says:

    Thank you for your beautiful story. I struggle with loneliness from being over 20 some years chronically ill. Battled Endometriosis which from surgical complications left me with an inability to properly digest food. Went from wasting away on a picc line to finding out about a raw plant food lifestyle. While I struggle less on that extreme diet it has given me half the quality of life back as I no longer live all day in the restroom sick to my stomach just sporadically each day. I never know when the cramps, nausea, IBS, hypoglycemia and tetany will hit me. Lately now due to years of malabsorption my joints are in pain and my ribs will easily pop out which causes tremendous pain. I’m stuck at home. I have two daughters who I’ve raised with my limitations and had outside hired help which I wish I didn’t need. My husband whom I thought I was marrying my best friend turned on me as I could no longer do fun things with him or give him the pleasures he needed or cook meals for him and do his laundry. We never saw eye to eye on parenting. I insisted on boundaries and manners, he likes to just have fun and stay up late talking as he works so much he rarely has time for them. They are older now and understand my limitations but it doesn’t take the sadness away from my heart of all the events and activities I had to miss. I had to fight to get my husband to go to them where I would have dreamed to just be there with them. Not only the illness is such a struggle but the loneliness as I can’t do what most can, due to my stomach and physical exhaustion and pain. I dream of finding someone to give and receive non-physical love and compassion unconditionally. I’ve searched online for how to make friends when homebound and ill and I came across your blog. I’ve been following The Mighty on Facebook but haven’t yet found someone to connect to on a more personal friendship level. I love horses and animals and wished I could find that like minded friend that understands what it’s like to suffer most of your life. My girls will be on their way to college soon and I feel what is the worth of sticking around this world when you really don’t have much left to offer. Thank you for reading and taking the time. Thank you for your beautiful post. I love passion fruit, they are my favorite plant by far. I hope everyone suffering finds those good days to add a bit of quality to their life. Many blessings to all!! xoxoxo <3

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