Not Everyone Climbs the Mountain the Way You Do

You've heard us challenge you to 'find your tribe' and 'tell your story,' because one of the best ways to see a positive side of living with autoimmune disease is to take your challenges and successes and share them with others trying to scale their own autoimmunity mountains. Your experience may help someone else find the correct diagnosis, navigate new lifestyle changes, or simply feel like they are understood by someone who has been through similar experiences.

An important thing to remember, though, is not to project all of our experiences onto someone else simply because they have the same disease as we do. Your autoimmune journey isn't going to mirror anyone else's. For instance, although my lupus has progressed to the point I can no longer hold down a full-time job, I know other people with lupus - even some who have had it decades longer than I have - who are able to work and do other things that I really struggle with. I appreciate that although we can talk about the up and downs of our disease, that they have never tried to force me into their own mold of experience.

This thought of relating without projecting came to me very strongly about 10 years ago. At that time, I was just over six years out from my breast cancer diagnosis and treatment, and my mother was diagnosed with breast cancer. I couldn't help but compare and find similarities with our experiences, and there certainly were some. My Mom was grateful that I knew how to navigate some of the challenges of coordinating care as well as some of the more practical things like how to tie a scarf on a bald head, and I was glad that I was able to help her.

Of course, there were aspects of her journey unique to her. I could have an opinion on something, but in the end, it was her choice to manage her disease in whatever way she felt was best. For instance, overall, I kind of had a 'who cares about what people think' attitude when it came to going out in public bald. I didn't worry about changing the way I did my makeup when I lost my eyelashes and eyebrows. I just figured I was saving money on mascara. However, these were things my Mom was more uncomfortable with. She was okay being bald at home, but she asked me to help her choose wigs that she could wear when she was out in public. I also went with her to a special workshop that the cancer center put on, where they gifted a bag of makeup to the attendees and demonstrated makeup tips and tricks for people going through cancer. This reminded me that if I really wanted to support my Mom, I needed to truly see her needs and instead of projecting the needs I'd had when I went through breast cancer.

So, warriors, this is just a gentle reminder to meet people where they're at. When you meet someone on the autoimmunity trail, and they want to do a straight shot up the peak when you recommend the more gradual switchback trail, or they want to forego hiking for awhile and find a place to rest, that's okay. There are countless ways to reach a mountain summit. I hope that regardless of how others make it up the mountain, you can celebrate the success with them. But, more importantly, if they don't make it up, rather than saying 'I told you so,' I hope you can support them as they choose a new path.