When I first wrote this post, I was angry. I typed everything I was feeling, in it’s entirety. Then, instead of posting it, I decided to sleep on it. I actually let it sit, as a draft, for an entire week. By the time I reread the draft, I was no longer angry. Now, I can write with a level head.
I was angry because I saw what I perceived as a great injustice happening in the autoimmune paleo community. Because of my personal struggles with lupus, I understand that an autoimmune diet is one of the most important parts of healing. But, it’s not the only part. Those of us with life threatening or disabling autoimmune disease must also live an autoimmune lifestyle.
Unfortunately, it seems that all of us with autoimmune disease have been lumped together under one huge autoimmune umbrella.
I understand that each of the over 100 confirmed autoimmune diseases cannot have it’s own specific nutritional and lifestyle programs. However, special warning should be given to those of us with life-threatening autoimmune diseases. Your fight is going to be more difficult. Your fight is going to take longer.
It’s very important for those of us with serious autoimmune to understand we may never be able to follow the same healing journey as someone else. Just because so and so is able to do Crossfit, doesn’t mean it’s good for all of us. There are some of us who have kidney or liver damage. Adding that kind of intense strain to our bodies would be detrimental.
Now, I’m so happy some people have reached a point in their health that they can now enjoy high intensity fitness. But, many of us with life-threatening or painful autoimmune diseases will never be able to reach that point. Many of us have had organs or parts of organs removed. Many of us live in fear of our next flare. Many of us can’t add any more stress to our daily lives.
Look, I don’t mean to start an autoimmune war. I just want those of you with severe autoimmune disease to be aware of some differences. It’s important to seek out information from those with similar experiences. Someone with lupus may have different problems than someone with vitiligo. Since I have both, I can speak of the differences between them. Vitiligo simply affects my appearance. Lupus affects my organs. I can’t die from a vitiligo flare, plain and simple.
All I’m saying is be careful whose advice you’re taking. What’s right for some people may not be right for you. Understand, there are many people online following the autoimmune protocol to rid themselves of inflammation. These people may not have an actual autoimmune disease. Or, they may not have an autoimmune disease that involves organ damage. We all come to the autoimmune program for our own reasons. Take the appropriate time to heal. Don’t rush into something just because someone you’re following on social media is doing it.
I made this video to discuss some of the things that bother me the most. Sometimes, it’s easier to get your point across on a visual level.
If you have trouble viewing video, try here.
I contribute Sarah Ballntyne’s book, The Paleo Approach, to helping to save my life. It provided me with all the pieces of the puzzle to understanding my autoimmune disease. Once you understand something, you know how to fight it.
The Phoenix Helix website features an AIP Recipe Roundup each week, which has an amazing collection of strict AIP recipes. Sometimes, you will see one of my recipes contributed to the roundup.
So, I’m really glad I decided to rewrite this post. I understand it is best to get your point across in a rational way. Sometimes, we can feel as though people online are trying to capitalize off of us for all the wrong reasons. And, sometimes they are. There are many irresponsible people out there. But, sometimes people really do want to help. They simply don’t realize the severity of your specific autoimmune disease. They’ve found something that works for them; and, they want to share that with you. It is then up to you to determine whether or not that advice will work for you.
Good health, everyone!