Is it Possible to Thrive with Autoimmune Issues?

When I was a child, I had a pediatrician I loved. Her name was Dr. Valencia, and she was the sweetest and most opinionated little Filipina lady you could ever meet. She saw me through my problems with asthma and allergies, and was probably credited with saving my life a time or two. Every time I went in to see her, she would sit behind her desk and lean back and talk to me like she had all the time in the world.

“Listen to your mother,” she demanded over and over. “You’ll regret it if you don’t listen to your parents.”

After puberty when I began to have the symptoms of autoimmune problems, she had no idea what was wrong with me. And since we were in a small rural community, pretty far away from any city of any size, there wasn’t anyone she could send me to in order to get to the bottom of it. So she did her best to treat my symptoms. And though she couldn’t diagnose what was ailing me, her care went a long way in seeing me through.

As a young adult, after moving to a city, I was able to be diagnosed and treated for ulcerative colitis. I respected and trusted my gastroenterologist. Dr. Subler followed all the traditional protocols of lots of procedures and tests and medications as treatment for this autoimmune disease, but I lived with the less than ideal results because I liked him. I would come into his office, and he would sit and talk to me about life. We would share what we were going through. He always cared about what I was experiencing and wanted to alleviate any suffering I was having. I never doubted that for a second.

After Dr. Subler moved away, I had two more gastroenterologists I loved. They cared about me, they did their best, and I trusted them.

Unfortunately, they both left the practice as well. And I entered the decade of my pregnancies, which for me caused my ulcerative colitis to all but disappear. If I began to have problems, after a little research and a few supplements and diet and lifestyle changes, I seemed to have everything under control. I thought I had figured out the cure, and I was set for life.

But my success didn’t last. When the positive effects of reproduction began to wear off a few years ago, I went back in search of a doctor. Because that’s what you do. But I found in the years I’d been having babies, things had begun to change in the world of specialists. I was suddenly in a production line of patients, being pushed through a factory-like list of procedures. When I would try to discuss the realities of autoimmune disease and the fact that medications and tests don’t work, I would be quickly dismissed or lectured at. When I would put off making appointments, I would get a letter saying I was being dismissed as a patient for not following the will of the doctor. Disheartened, I went my own way to take on the responsibility of autoimmune disease on my own, as so many like me have done.

Autoimmune disease is hard. It’s hard to figure out what to do, because what might work at one point may not work again in the future. And there are so many variables that we have no personal control over, like the weather or stress or environment. We can do everything right, and yet still suffer.

My symptoms intensified in the past couple years, and dragging my feet all the way, I went back to the doctor at the urging of my husband. I found a wonderful GP, actually a friend from church going all the way back to our teenage years. And once again I was sitting in the room with a doctor who truly cared, who wanted to help, who didn’t mind sitting and listening and taking her time to carefully decide how to proceed. She sent me to a new gastroenterologist we both hoped would be a better fit than the last one.

In July of last year, I called to make the first appointment. I waited two months to actually see the doctor. When I arrived in her office, I was greeted by an unfamiliar doctor, a young man who told me it was his first day as an intern. He was friendly enough, but he simply read through a list of questions. He went to confer with the doctor, who literally stepped into the examination room for five minutes. She gave me a checklist of tests that she would be performing that I should schedule, and brushed off my concerns about my inability to prepare for one of them. She was gone in a flurry of white.

Months went by as I waited for the tests she wanted done. (One of them was canceled once because she was taking a vacation to Europe.) In the end, by December, I had finally completed them (and was completely right about my inability to adequately be prepared for one of them, through no lack of trying.) Her verdict was sent to me via email. I was to take meds (that I had already told her I don’t see any results from.) She would no longer be seeing me (no explanation given) and suggested I call three other doctors for further treatment.

If this wasn’t discouraging enough, the bills from the two procedures she had prescribed (that she had barely addressed the results of) ended up costing us over $1000 after insurance paid all they were of a mind to pay.

And I was back at square one, with no improvement in my health after six months of pursuing traditional medical help.

Why do I tell my story? Because I hate doctors and the medical field and believe that we should depend completely on herbs and oils and vegetables for our health? Not at all. I still have had far more experience with caring people in the medical field than I have had negative. And beyond that, I’ve gone the other way and went to an integrative doctor who tried to treat my problems through supplements and diet changes, and though I did everything she instructed over a period of several years, I saw very little improvement in my health. And the reality was that insurance didn’t like paying for her services, either.

So what’s the answer for those of us with bodies who can’t seem to tolerate life? Who have conflicting health concerns that sometimes make us feel as if we are going completely crazy? Are there any solid answers for living with autoimmune conditions?

I’m not claiming to have any concrete answers that will change our lives. I think part of having an autoimmune disease is coming to the conclusion that our lives will always be more difficult than others’.

We will not be able to do it all. We will have to rest, stay home, be still, avoid stress and eat a strict diet.

We will have to learn to depend on our own good choices and research. We will have to find out, by trial and error, what helps and what makes no difference.

We will have to be disciplined to keep our bodies in shape even when the thought of moving makes us want to cry.

We will have to patient when flares interrupt our plans, our dreams, and cause us to disappoint those we love.

We will have to find something greater to live for than health. We will have to learn to smile and move on when others tell us we just aren’t trying hard enough, or we are unwilling to be helped.

This life is hard. Autoimmune disease is one way the darkness of this world is revealed. Our world and our bodies are wearing out. We are beginning to understand the verse in the Bible that says all of creation is groaning, waiting for God to make everything right.

But that being said, we can persevere. Autoimmune disease is no excuse to curl up in a ball and give up on everything. Pressing against adversity is what makes us stronger, both mentally and physically. Our despair shouldn’t go on continually or become a habit. At some point we must pick ourselves up, claim God’s promises that he will sustain us and accomplish his purposes for us, and we must go on and defy the odds.

Some practical advice that is likely to do some amount of good: 

Eat God made foods. 

Eat in balance. 

Take rests from eating.

Drink water. 

Be in the sunlight and fresh air as much as you can. 

Move every day, and increase the intensity of your movement little by little. 

Find your passion. 

Be still and hear God’s voice, and tell him your every thought and feeling. 

Rest. 

Find ways to declutter your schedule and have more down time. 

Enjoy relationships and pursue what is inspiring. 

Make deliberate steps to avoid the stress and chaos of this overcomplicated and greedy society. 

Live for others. 

Show compassion and mercy. 

Wherever you are, ask what you can do to improve it.

Autoimmune disease probably won’t be cured without an act of God. But we can learn to exist anyway. To fully live. Don’t let it be an excuse that causes you to give up or become bitter.

What about you? Do you have any ways of coping with autoimmune problems? Have you found anything that helps? Share in the comments. And thank you for reading! I pray God’s best for you in this new year!