The Loneliness of Autoimmune Disease

You know, I always like to be the voice of optimism. It’s not like I talk about autoimmune disease as though I’m living in a world of rainbows and lollypops. But, I do try to find the silver lining in most situations. On Easter, I had a revelation of sorts. I realized that having an autoimmune disease can make you feel very lonely.

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The Loneliness of Autoimmune Disease

I think the hardest thing for others who don’t have autoimmune disease to understand is how sick we can actually feel sometimes. They understand illnesses such as cancer or heart disease. However, no one really knows much about autoimmune disease. And, frankly, most don’t even bother to learn anything about it either.

Easter day, I really wasn’t feeling well. I was suffering from joint pain, bleeding, severe exhaustion, sinus issues, and chest pains. We attended church that morning. I was hoping that the special blessing would create some miracles in my healing. Then, once we reached home, I had to cook my AIP dinner, to bring to my in-law’s house later. I basically worked in the kitchen until it was time to leave. I was feeling apprehensive because I knew there was a chance I would be exposed to the c-diff bacteria and the flu virus by going there. But, because no one understands what these infections could mean to a person with autoimmune disease, I was expected to be there.

Once there, not one person asked me how I was feeling, or how I’ve been doing. I mean, it’s not like I would go on and on about it. I’ve learned to keep my answers short and sweet. I was totally alone. That’s when I started thinking about all of you out there, feeling that same loneliness. How many times have you felt alone with your disease, even in a room full of people?

I understand, we live in a world full of self-absorbed people. My favorite, the people who ask how you’re doing, to use it as a segue to talk about their own aches and pains. Love that! You know what I’m talking about. You can not your head. It’s okay. Those conversations usually leave you pretty lonely, too.

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The Autoimmune online community can help ease your loneliness.

I think it’s all these lonely situations that lead those of us with autoimmune disease to the internet. We’re seeking others who understand what we’re feeling and going through. It’s a shame that we have to seek solace in strangers, when our own friends and family let us down. That being said, I thank God every day for those strangers, who have now become my most supportive friends. The AIP community has become my rock!

If you’re feeling lonely and overwhelmed, I urge you to seek out autoimmune communities and groups online, and in your area. Sarah Ballantyne, The Paleo Mom, has a great site to help you find other AIPers in your town. You can find it here. Also, follow me on Facebook and Instagram. You can leave me comments, and start interacting with others in the community. I always reply to comments. I’ll never leave you hanging!

Truth is, we can’t expect people to understand what we deal with, having autoimmune disease, if they’re not even willing to ask questions and listen to our answers. Even those closest to us can feel helpless about the fact that they can’t do anything to make us feel better. They don’t mean to make us feel alone. It’s hard for them to understand a disease that cannot be cured, and that can seem to go away, then come back again. They simply don’t get it.

I left Easter dinner early to get some much needed rest. Honestly, I couldn’t wait to get back to my online AIP community on Monday morning. That morning, I posted about my need for rest because of my lupus flare. A smile spread across my face as I read all of the well wishes from my autoimmune buddies. They understood. They got it. I was no longer alone.

As always, I wish you all good health……..and, good food!

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Tara Perillo

Welcome all. I am Tara Perillo, herbalist, homeopath, yoga and fitness instructor, and healthy foodie . After successfully reaching remission of my lupus symptoms, through changes in my diet, exercise, and lifestyle, I wrote the ebook, Sickness To Fitness Quick Start Guide. I am also honored to have my paleo and AIP recipes featured in Paleo Magazine, Paleo Living Magazine, Shape Magazine Online, 85 Amazing AIP Breakfasts, The Paleo AIP Instant Pot Cookbook, and blogs by The Paleo Mom, Kris Kresser, Whole New Mom and many others. My focus is to help others become stronger in every facet of their lives. Join me to become stronger in health, mind, body, and spirit, together!

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10 Replies to “The Loneliness of Autoimmune Disease”

  1. I go through this a lot! I’m so glad I get to connect with understanding and supportive individuals through Facebook and the internet. A strong network can make a world of difference! Thanks for all your support and well wishes!

    1. Thanks Kat! You’re so right! I don’t know if I would have been able to deal over the past year, if I didn’t have all of you. It has made such a difference! Your support has helped me through some pretty tough times. It’s so wonderful how a group of strangers can bond together to create a healing network of friends. I feel so blessed. I’m praying for you, as you go through your tests today. Hopefully, you’ll get more answers to what’s going on. Smooches, my friend!

  2. So well said Tara. It is definitely lonely with few people who truly understand what people with autoimmune diseases go to. I think the importance of connecting with others is so important! I hope you got some rest and are now feeling better!

    1. Thank you so much Kari! Connections are so important to us! It’s amazing to find others who are experiencing similar healing journeys. And, thanks for the well wishes. I am starting to feel better and recover. Smooches!

  3. I can definitely relate to this. I had a conversation recently with my husband about how I want so badly to have face to face connections {which is funny, coming from an introvert} with people who get me. Like-minded to a point, but different enough to keep things interesting. I fully appreciate the connections I’ve made online because those connections are with people who get it. I think this is part of the reason social gatherings drain me. ♥

    1. Thank you Erin! It’s so funny how us introverts have been able to make such strong connections online. You’re right about our differences making us interesting. I’m just so thankful for the bonds I’ve created, especially with people like YOU! I hope you’re feeling better. That vertigo seems like it just wants to hang on to you. Isn’t it horrible how old injuries and illness can come back and bite you in the butt? I hate that! Hopefully, your treatments will be successful. I’m praying for you darlin’!

  4. I completely agree with and empathize with how lonely an illness can make you feel. Although I don’t have an autoimmune disorder, my daughter does (she’s 8). I battle my own set of digestive illnesses and our family follows this lifestyle to try to redeem our health. Eating such a limited diet and feeling the need to explain your illness can be so isolating. I, too, am happy to have such great resources and role models to follow in the paleo and AIP community. I feel like I have found my tribe, I just wish I could create some friendships locally with others who can relate.

    1. Happy to meet you, Courtney! I’m so sorry to hear about your daughter. I was diagnosed with my first autoimmune disease, vitiligo, when I was about her age. It sounds like she has a good momma, standing beside her. Have you looked into The Paleo Mom’s Community to see if you could find people locally? I know many people who have made wonderful connections that way. The link is in my post. Unfortunately, there aren’t any peeps in my area either. But, anytime I need a smile, I go straight to Instagram. The AIP community is amazing there! Hugs and smooches to you and your daughter!

  5. Hi Tara,
    Thank you for sharing this post! I can definitely relate to what you are saying and how you are feeling. It can be overwhelmingly lonely sometimes. Even when I am feeling fine it can still get lonely because life just looks different for me now. I too try to remain positive but some days I just need a hug and some understanding 🙂 Happy we all have each other in this.

    1. Carrie, thank you so much for your comment. While I’m sorry so many of us feel the loneliness of having an autoimmune disease, I’m so happy for this community of likeminded people. Even the virtual hugs I get make a difference. Hugs and smooches to you!

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