Soldiers are holding their positions, waiting for the signal to attack once the enemy is in sight. But hold on, what’s happening? Suddenly soldiers are firing on their own comrades. This isn’t supposed to happen. It’s a mistake! Somehow the soldiers have mistaken their own men as the enemy. Some would call it friendly fire, but this situation’s out of control. Not only are they wounding their own men, they’re aggressively firing, aiming in every direction.
Mission control, we have a problem! What’s going on?
When you read this scenario, it sounds like a warzone, right? What if I told you that I wasn’t describing a battle or a war in some foreign country or on a battlefield? The battle is happening in your own body.
What I’ve just described is a classic case of autoimmune disease. The soldiers attacking your body are called autoantibodies. And when they start firing in your body, the body has a hard time shutting them down.
That’s because the autoantibodies think your body is under attack from an outside invader. Only there’s no outside attacker. So the autoantibodies turn on the proteins in your body and attack them instead, causing illness. And the control center in your body doesn’t know how to turn the autoantibodies off.
In autoimmune disease, the problem is an overactive or overstimulated immune system rather than a weakened one.
For a long time, people have understood what it means to have a weak immune system. With a weakened immune system, a person tends to have a lower resistance to infections. Therefore, they might get frequent infections that can turn into something more severe. For instance, a cold can quickly turn into pneumonia or meningitis when you have a weakened immune system.
Contrast that to someone with an autoimmune disease. Rather than having a lower resistance to fighting infections, a person with autoimmune disease has an immune system that’s in overdrive. It doesn’t turn off. It’s overly sensitive and senses a problem, even when there is none.
A body with an autoimmune problem can’t tell the difference between a foreign invader like a cold virus and its own cells. So it goes into attack mode and is constantly in defense. And, while it may seem like it wouldn’t be that harmful, nothing could be further from the truth.
Let’s say you’re a runner who runs two miles every morning. Think about your body setting out to do its usual two-mile run. But instead of stopping at two miles, it continues and never stops. No matter how hard you try to stop, your body just keeps going. How tired would that make you? Think about what it would do to your body. It would stress your body beyond what’s normal. That’s what autoimmune disease does.
Autoimmune illnesses can attack a specific part of the body, like the thyroid, or nearly every system, including the major organs. There are more than 100 different autoimmune diseases that have been discovered, but there are likely more.
Some of the more familiar autoimmune diseases are rheumatoid arthritis, lupus, Type 1 diabetes, and multiple sclerosis. But, there are dozens more that are rarer and affect fewer people. The American Autoimmune Related Disease Association (AARDA) believes that as many as 50 million Americans suffer from some form of autoimmune disease.
What’s more, autoimmune disease is one of the top 10 leading causes of death in females up to age 64.
My Struggle With Autoimmune Disease
My experience with autoimmune disease is a lengthy one. My fight started 30 years ago when I was diagnosed with Graves Disease.
Then I was diagnosed with Meniere’s Disease.
Then Hashimoto’s Thyroiditis.
Then myasthenia gravis.
And most recently with mixed connective tissue disorder, a disease with a combination of autoimmune illnesses like lupus, myositis, Sjogren’s syndrome, and arthritis.
It’s not unusual for a person who’s diagnosed with an autoimmune disease to develop other autoimmune illnesses. You could say it runs in the family. Autoimmune diseases like company.
I’d say the worst part of all of these illnesses is the profound fatigue I experience. One of my former doctors explained it as the body in a constant fight against itself. The autoimmune disease is trying to destroy whatever part of the body it’s attacking.
So there are periods of constant attack which wear on your body and fatigue it beyond normal levels. It’s a fatigue that is unrelenting, stealing parts of your life that you can never get back.
And while I have other symptoms like pain, problems with breathing and swallowing, vision disturbances and weakness, at times, it’s the fatigue that is the hardest to push through. It’s as though I’m anchored down, unable to move or fight.
My mind is strong so I tend to try and convince myself that I can do more than I think I can. I used to have many days when my mind would win. These days, my body decides. There’s no amount of positive thinking that enables my body to do any more than it can.
Each year, I lose more and more of my abilities. But, in spite of what I can’t do, I try to concentrate on what I can do. And I try to discover new abilities.
The diseases I suffer from have no cure, that is they are chronic and I’ll likely have to deal with them for the rest of my life. I get bi-monthly IVIG infusions to treat them, but they are not a cure-all.
If you’ve been diagnosed with a chronic autoimmune illness, here’s what I’ve learned helps.
As long as possible, keep moving.
Get exercise and do something you love. If you enjoy dancing, pump up the volume and get into the groove. If it’s yoga, keep it up, doing lighter routines if you have to.
One of my favorite activities has always been gardening. Even though I wasn’t successful in being able to do so for the past couple of years, I plan to try again this year on a smaller scale. I’m also starting to do some light yoga and get on the treadmill.
It’s very easy when you’re sick to stop being active and sometimes it really can’t be helped. But, whenever and as long as you can, remain as physically active as you possibly can. It may be only fifteen minutes a day, but it’s better than nothing.
Learn to delegate.
This is something one of my former neuros used to tell me a lot before he moved. If you’re a supermom like I used to be, you need to learn to delegate more. Or at least not be a perfectionist like I used to be. It catches up with you.
I used to spring clean my house every month. My home was always spic and span. On top of that, I was the one who did all the yard work.
The day came when could no longer do it all. By this time, the kids had grown and moved away. So, I’ve just had to learn to let things go. I’ve had to learn to not let it stress me if the dishes or clothes don’t get done right away. And, sometimes I have to ask my husband for help. Plus, I’ve hired a yard guy.
Learn to delegate and pass some of the chores onto someone else. Don’t do like I did and push yourself beyond what you should and wear your body out sooner. Be reasonable about the expectations you set for yourself.
Eat a healthy diet.
Okay, this will sound like I’m preaching and I can just picture the number of eyes that are rolling right now. I’ve been there. And, I sometimes just say ‘screw this’ and load up the grocery buggy with my favorite treats. Sometimes you gotta live, right?
Research shows that many autoimmune sufferers are deficient in many vitamins and minerals. Nearly every vitamin test I’ve taken has shown me to be profoundly deficient.
I’m so thankful for a neurologist that many years ago tested my B12 levels when I complained about my cognitive decline. I was actually scared I had the beginnings of Alzheimer’s. He discovered that my levels of B12 were too low and put me on injections. It’s because of him that I’m able to write today.
So, I’d suggest you get a doctor who looks beyond the normal blood tests and tests your B12 levels at the very least. People with autoimmune disease also tend to have a low Vitamin D level. I take supplements, but I can’t say that I notice a difference in anything like I did with B12 supplementation.
When I’m behaving, I also eat a diet rich in berries, greens, salmon, grass-fed beef, organic chicken, sweet potatoes, and vegetables. Avoid gluten and sugar at all costs. And, if you have a thyroid problem, hold the greens. They’ve been known to actually flare thyroid issues.
Adapt to changes.
If you have a type of autoimmune disease that morphs and changes like so many of them do, you’ll experience changes in your body that are out of your control. You may lose the ability to do certain things like I did when I could no longer garden for several hours a day.
It’s easy for this to affect your mental state as well as your physical state. Instead of concentrating on what you can’t do, find something else that you can do.
Gardening was my life for so long. It fed my soul. I can’t do it on the scale I once did. So I found other things to feed my passions. I’ve had a vintage jewelry and antique shop online. Then it became hard to pack and ship items. So now I’m writing.
Explore your heart and find other passions so you can continue to do something that makes you feel alive and functional. Find ways to thrive and not just survive.
I have one friend who didn’t realize she could paint. She started collecting leftover crayons from friends and family and melts them and paints beautiful pictures with them. I know someone else who paints tiny pictures on rounds of wood slices and sells them.
We all have an undiscovered talent or passion. It’s your job to figure out what it is so you can feel fulfilled and happy, in spite of dealing with a disease that cripples many of your abilities.
Just because you have an autoimmune disease or two or three doesn’t mean your life can’t have meaning and purpose. You can thrive while living with illness. Life goes on and so should you.