‘You don’t feel good again, Mom?’ How do you explain to children what an autoimmune condition is?’: Mom with 2 autoimmune diseases shares how she took her life back

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“‘You don’t feel good again, Mom?’ my six-year-old daughter asked as I laid down next to her, ice over my eyes. ‘No, honey. Mommy is dizzy right now.’ My four-year-old son hopped next to me and wrapped his arms around my neck. ‘It’s okay, mommy’s get tired too.’

He was right, I was tired. But it went beyond mom tired. How do you explain to children what an autoimmune condition is? That mommy is going to have this happen again. I could already feel my daughter’s resentment toward me, as she held her baby dolls tightly, because I couldn’t play with her again. I too resented this unfortunate hand I was dealt. I didn’t feel like a 34-year-old. I felt like a 75-year-old with tinnitus, vertigo, and a limited low sodium diet. 

I also desperately wanted to explain this autoimmune disease to my daughter’s teacher who kept asking if I could come in a couple times a week to make copies. To other moms asking me to be a part of the PTA and the sports associations we were participating in, asking parents to step up and coach their children’s teams. 

But the reality is, no one knows I’m living with two severe autoimmune conditions. I look perfectly normal on the outside, however, on the inside, it could be a terrible day for me. There is not much awareness about autoimmune conditions, and to be quite honest, it’s hard to convey to people. Those who truly know me know I’m a pretty outgoing, engaging person. But I could appear distant or shy standing at school pickup, because on the inside I have a debilitating migraine, tinnitus, and brain fog.

Autoimmune conditions are truly an invisible disease to outsiders, but for those suffering from them, it controls our entire world, and unfortunately we never know how we are going to feel day to day. Add in taking care of two children, keeping the home and finances in order, and making time for myself and spouse, it’s no wonder nearly 80% of the people with autoimmune conditions in the U.S. are women. When I read that statistic I was shocked, but I was not surprised.

In my decade-long battle with autoimmune diseases, I have had to become my own health advocate. I’ve had to do my own research, as there seems to be a common theme; 1) health care providers are still just learning about autoimmune conditions and 2) it is very hard to be diagnosed with the correct one.

I will spare you the details, but it took me almost a full year, several blood panels, CT scans, MRI’s, and seeing over a dozen different types of doctors to receive my first diagnosis of Meniere’s Disease, a rare autoimmune condition that affects hearing, balance, and vertigo. I was told by my doctor to get hearing aids, avoid sodium and caffeine, and that’s about all I could do. What I wish I knew then, was once you’ve been diagnosed with one autoimmune condition, you are more at risk to procure other autoimmune diseases as time goes on if you don’t take care of yourself properly.

And that is exactly what happened to me. I had to leave my job due to my severe vertigo and inconsistent bad days. I never knew how I would feel when I woke up in the morning. I could feel great for a week in a row, then wake up flat on my back with vertigo and extreme fatigue for 48 hours. Just going out to eat would cause me anxiety, as I didn’t like to bring attention to my autoimmune issues. But at the same time, if I ate the wrong thing, not knowing the ingredients — certain inflammatory items such as wheat, high sodium, or gluten — it could increase the likelihood of another attack on my body.

Four years had passed since my first diagnosis. My husband and I decided to try to start a family. We had trouble getting pregnant, but finally did after a year. Looking back now, I didn’t know at the time autoimmune diseases can cause infertility issues, and I encourage any couple trying to conceive to get a full blood panel done (including full thyroid levels). It was about nine months after giving birth to my daughter that I started feeling depression, anxiety, extreme fatigue, brain fog, hair loss, and weight gain — all common things to feel after having a baby. In fact, many of those symptoms could easily be misdiagnosed as postpartum depression, or simply depression.

That is the biggest problem with autoimmune diseases. The initial symptoms are so common nowadays, especially post COVID, feeling depressed or anxious being just two. Once those initial symptoms your body is trying to signal to you go unnoticed, it will enter into full autoimmune flare up. There are around 80 different autoimmune disorders, all of which affect the body differently, but usually start out with feeling tired, achy, and depressed. Some of these autoimmune disorders are lupus, rheumatoid arthritis, graves’ disease, multiple sclerosis, and Hashimoto’s thyroiditis. A vast majority of these people, as mentioned, are women, especially those in childbearing years. 

Think about it, you’re putting your baby’s needs first, not getting much sleep or rest, dealing with huge stressors, going through hormonal changes. It makes sense that all of that can lead to your body shutting down. It is very common to be diagnosed with Thyroid autoimmune disorders post birth, which was the case for me. I knew something was not right in my body, so I had a full blood panel done. 

Turns out my thyroid antibodies were through the roof. I was diagnosed with Hashimoto’s, a thyroid autoimmune disorder. I was told by my general physician this invisible disease was causing my immune system to attack the healthy tissues in my thyroid, which essentially is the control panel for the entire body. He told me to take a certain prescription pill for the rest of my life, lower my stress level, and I should be fine. Much easier said than done.

As I walked through the door, feeling defeated and exhausted, I thought to myself, ‘There has to be more I can do to help my body and help other women who may be going through this, or who may go through this one day.’ I was determined not to lose my spirit or drive for life, even on those super hard, unpredictable days. And the only way through was becoming my own health advocate and practicing gratitude. You see, you have to be on guard against self-pity. Once you go down into that pit, it is so much harder to get out. You have to think of the things you are grateful for. For me that was my family and friends, so near and dear to me. When you’re too occupied with praise and appreciation, it’s almost impossible to feel sorry for yourself.

It has now been six years since I was diagnosed with Hashimoto’s, and ten years since I was diagnosed with Meniere’s Disease. I have found a functional doctor who helps me treat my symptoms without loading me up with drugs. I have educated myself on what vitamins to take, proper gut health, and what foods to eat and avoid. Even on those really bad days where my daughter asks, ‘Mom, you don’t feel good again?’ or I have to force myself to literally do nothing, so I don’t cause a longer flare up, I feel grateful. I feel grateful I am a mom. I feel grateful right now, being able to share my story. 

Joining an online autoimmune support group has also helped immensely, since it is very hard to explain and share with people what it is like living with an autoimmune condition. I live it a day at a time. There is no quick fix, it’s a lifestyle change. Besides support groups, I have done enough research to change my eating habits and be aware of triggers. It is very common that gluten and dairy are big inflammation triggers for those with autoimmune conditions. Simply learning to say no to that glass of wine, because honestly, my body can’t handle it. A normal, healthy person can have one glass of wine. For me it could trigger a vertigo attack lasting up to 24 hours. It’s also vital to take time for myself to gently exercise, whether that’s walking or yoga. It has been a game changer. And as stated, taking the quiet time to pray, meditate, and give gratitude.

And I have to say, learning how to do those things as a woman and a mom didn’t come naturally. Women are so good at multitasking, but we are not so good at prioritizing our own needs and health before others. Men have this amazing ability to compartmentalize their job, their family, and take time, guilt-free for themselves. And that’s where I would like to tell every woman who feels burnt out, stop prioritizing yourself last. Take it from someone so burnt out that I incurred two autoimmune conditions partly because of it. But I also have to say, women are very intuitive. We know our bodies. If you feel like something isn’t right and you’re not getting the correct answers or proper care for your health, keep researching, and find a new doctor until you are okay.

I have since gotten over not wanting to offend anyone if I order something gluten free just for myself. I have been known to pack my own snacks while eating out. And I recently stepped up to be one of the coaches on my daughter’s softball team. Coaching has been an awesome experience since I loved playing in high school. I have had to miss some practices and a game or two if my body is not where it needs to be that day, which is okay. 

It’s okay to say no to being the copy mom. No one has unlimited reserves. And the more I educate myself and become my own advocate, the more I notice other women being diagnosed with similar autoimmune conditions (many from high school and college) and I feel comfortable reaching out, letting them know they are not alone, and they can still live their life. It will be okay.

My final takeaway is that I did not want to just get through the day, I want to live the day. I want to live a full life. Yes, autoimmune diseases are a lifelong battle. My body will always be in some kind of a tug of war with itself, fighting these two chronic conditions. I will always have good days and bad days based on my own internal symptoms and outside factors (like most people do). But mentally, having gratitude, appreciation, and determination to still live a full life is all that matters.”

mother with autoimmune diseases holds her two children close to her while at the beach
Courtesy of Rachael Ramas

This story was submitted to Love What Matters by Rachael Ramas. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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