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.
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.
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!