It starts with our girls: Preventing autoimmune disease in women

This is me - long before my autoimmune diagnosis, but at a time when my beliefs about myself were being shaped.

If you are a woman, love a woman or are a parent of a girl you need to understand this epidemic that’s robbing so many of their happiness, health and vitality. In the United States, more than 50 million people live with autoimmune disease and 80% are women. It is one of the top ten leading causes of death in girls and women under 64 years of age. Some suspect the female propensity is related to hormones or chromosomes. But the more I talk to women with autoimmune disease, the more I believe there is something more to it. There is a commonality among us. We’re high achievers, people pleasers and perfectionists. Most of us strive to be everything to everyone, and we do it with a smile.

What is autoimmunity anyway?

When I got the news I had scleroderma, I had no idea what an autoimmune disease even was. I knew about MS and lupus and rheumatoid arthritis, but I didn’t know they had anything in common. This isn’t surprising – conventional medicine likes to separate these diseases and treat the system or organ affected. That’s why when you have RA you see a rheumatologist; if it’s Crohn's you’ll be referred to a GI doc; if you have Hashimoto’s you’ll go to an endocrinologist.

These doctors are trained to treat the symptoms of that particular organ or part of your body, but the issue is not actually rooted there. If you have rheumatoid arthritis, it isn’t a disease of your joints, even though that’s where your symptoms show up and where your doctor focuses your treatment. These are all diseases of the immune system. Your immune system mistakenly attacks your own body’s tissue as if it’s a foreign invader, like it would a virus. If you’ve got one autoimmune disease, you are three times more likely to develop another.

Autoimmune diseases are the result of several root causes that have likely been festering for a very long time. Leaky gut, infections, genetics, and diet are all factors. Another often overlooked or misunderstood contributor is stress. We all have stress in our lives, but it’s our perception of that stress that makes all the difference.

The autoimmune mindset

The first time I heard the word “perfectionist” I was 9 years old. My mom was describing to a friend my tendency to want to stay up late to finish projects for school or read so I was ahead of everyone else in class. “She’s a perfectionist,” she said.

I wore my perfectionist badge with pride and continued to see it as my greatest asset throughout my life. It meant I worked hard. I gave my all to every project, every job, every hobby and every relationship. It meant that people liked me. Who wouldn’t like the girl who's always smiling, never says no and is eager to please?The problem with the hamster wheel of striving for perfection is that you’re never going to arrive at a place where you are truly happy. You, your life and everything in it will never be good enough. My teacher, Dr. Keesha Ewers, calls this the “autoimmune mindset.” She says "a hyper-vigilant mind leads to a hyper-vigilant body."

My journey to heal from autoimmunity has forced me dig deep and look inside myself for answers. Before this, I was so disconnected from my body and my emotions that I couldn’t even feel the stress and overwhelm I was experiencing. A wise woman told me - your mind will deceive you, but the body never lies. It was my body that made me clue in to how chronically stressed I was. I’d be sitting at my desk working and I’d notice my fingers were a deep shade of purple. I have Reynauds, which commonly goes along with scleroderma. It’s triggered by the cold but also by stress. I didn’t notice that I felt stressed, but when I stepped away from my desk and meditated for 10 minutes, my fingers returned to a normal color.

When I learned to start reconnecting to my body and to my thoughts in those moments, I realized I was constantly worried – worried I wouldn’t meet a deadline, or my work wouldn’t be good enough or that I would let someone down. I was still that little 9-year old girl wanting to please my teachers and get a gold star, and it was making me sick.

Dr. Gabor Mate, in his book, When the Body Says No, explains that, “when we have been prevented from learning how to say no, our bodies may end up saying it for us.”

Now that I understand how detrimental this personality trait is, I’ve been working hard to chip away at it. This is not easy, but in order to heal, I truly believe it’s essential.

Stress and autoimmune disease

So you can see how my perfectionistic, people pleasing ways have been the culprit for chronic stress throughout my life. But how does that stress contribute to autoimmunity?

Humans are wired to be able to fight or run away from a threat to ensure their survival – think caveman running from a tiger. Your blood starts pumping and your muscles get the blood they need to run or fight. All of your body’s energy goes into your survival system. You have probably heard of this fight or flight response. It’s a normal, healthy reaction to a stressful event. The problem arises when we are in this state all the time – think girls and women who are trying to constantly achieve more, get more done, never stopping for a moment to rest.

This stress response signals your adrenal glands to release cortisol. When cortisol is balanced, it’s a good thing. It reduces inflammation, helps control blood sugar and regulates blood pressure. However, when you are constantly releasing cortisol because you are chronically stressed, this causes tissue and organ breakdown in the body. It also breaks down the lining of the intestinal wall, which leads to leaky gut. When you have leaky gut, food particles, toxins and bacteria get through the wall of your intestine and flood your bloodstream, causing inflammation and setting off an immune reaction. If the leaks aren’t fixed, skin issues, digestive issues, allergies can result, and eventually, it can lead to full-blown autoimmune disease.

Over 80% of people diagnosed with autoimmune disease report that they experience emotional stress before the onset of their symptoms. Many women notice their first symptoms after they have children. I was diagnosed with autoimmunity shortly after the birth of my daughter. I loved and was in awe of this beautiful baby, but I felt overwhelmed and exhausted. I didn’t know then the importance of taking care of myself first. I didn’t listen to the advice to nap when the baby naps. That over-achiever in me thought I could just push through the day, even though I was up all night with this baby who wouldn’t sleep. I didn’t ask for help because I thought I should be able to do it all myself. I believe this overwhelm and sleep deprivation was the straw that broke the camel’s back for me. My body had had enough. If I wasn’t going to stop and rest, my body was going to make me.

"Illness is what happens when women, the nurturers of humanity, forget how to nurture themselves," Dr. Habib Sadeghi

There are many factors that contribute to the growing rates of autoimmune disease in women, and thankfully many of them within our control. My daughter has my genes, and genetics can play a role in autoimmunity, but I know how to help her to prevent those genes from expressing themselves. It starts with raising her to love who she is, showing her she is good enough, and teaching her it’s okay to say no. We need to be an example for our girls by taking time to nurture ourselves and by celebrating other women for who they are not for how much they can accomplish in a day.