Having written recently about my search to obtain a diagnosis of my autoimmune disease, and the praise to God about how he brought me through, I’m now resurrecting an actual post written during those years when I was still seeking a diagnosis. Here I share a few ideas for those who are still learning about their chronic illness.
There’s now empirical and objective evidence that I’m gradually improving. Today I’m writing about what has worked for me, hoping it will help you or someone you love.
But first, I want to make something clear.
Each person’s autoimmune disease is unique. No two cases are alike. Your body attacks itself like no other human body. There is no script. However, in spite of this unique quality of your disease, all autoimmune diseases have similar symptoms. Therefore, these diseases are difficult to diagnose. Only a few autoimmune diseases, like Type I Diabetes, have a simple test. This is why it takes three to five years to get a diagnosis.
Today I’m writing about how I’m fighting off my own disease. This is what is working for me. I can’t guarantee it will help you. But then again, maybe it will. That’s why I’m writing. With that in mind, here’s what I did and continue to do:
Be patient. Keep Going. Everything will require time and patience. For instance, exercise and yoga-like stretching are supposed to make you feel better. But relief isn’t immediate, likewise when you start a new medication. Six to nine months after you start you may begin to feel it working. A year later, you’ll realize you’re starting to feel better. Keep going, but learn your body’s signals that indicate days you should rest.
For this reason:
Write down every little improvement as evidence. These are signposts. Because it’s so gradual, I often wouldn’t realize I was improving until I looked at the pattern I saw in my notes.
Document the entire history of your disease and all your symptoms. This will help your doctor diagnose. Give it to her and discuss it all.
Overlook nothing. Autoimmune diseases are weird, and we usually have several. I have at least three. One random symptom I had for five years involved my hands. The joints simply began to dislocate, my skin to tighten, and my fingernails to disintegrate. No one ever figured out why. One doctor feared that my body flirted with Scleroderma. Medication and PT did eventually help.
Research your symptoms. Then treat them. Thank God for Google! We can now find quick solutions. But only use reputable sources affiliated with autoimmune disease research. The AARDA, the American Autoimmune Related Disease Association, is the best place to start.
Relentlessly pursue good health. For me that meant several things: I was overweight. I did not handle stress well. I was a workaholic. My work habits and posture as a writer were horrific. I had quit exercising because I didn’t think I had time.
These together made a mess of my overall health. I realized I had no control over what was going on inside my body, but I did have control over what I ate, how I worked, and whether I learned to handle stress. So I tackled these first:
- Weight loss – I did this slow, patient, and healthy using MyFitnessPal on my iPhone to track calories, so I could lose half a pound a week. Gradual weight loss is best achieved with a balanced and nutritious diet.
- Counseling – I needed some behavioral fine-tuning, and I needed emotional support.
- Fitness – I started slow since I could barely get out of bed, but I started.
Assess your health, and determine what you need. Listen to your body, the doctors, and the health gurus. As part of my weight loss and fitness goals, I did these things:
- I permanently changed what I eat: I eliminated sugar. I began to eat more fresh vegetables and more protein. I added these supplements that I saw routinely recommended for people with autoimmune disease. I also added: Bragg’s Organic Apple Cider vinegar. Sauerkraut. Essential oils that boost immunity. If you’ve done the research, you know why. Some people require a diet with even more regulation and change. Look into this. And this.
- I changed the way I work: I’m always aware of my posture now, and I keep my body properly aligned. I work from a stand-up desk. I pause frequently to move and stretch. I stay hydrated. I strive to recognize when I need to rest and when I need to keep going. If you’re also a workaholic, you know we don’t recognize this line. I paid attention to my body, so I could learn.
- I learned to say no. I reduced my workload. I now comprehend that I can’t do everything. I’m not superwoman. No more sixty-plus hour work weeks.
Keep pain at bay. One common symptom is chronic pain. Accept that this is true. Don’t be in denial. Learn to deal with your own version of it, and be proactive. Whether it’s painsomnia or migraine or body-wide agony, there are solutions. Here are some products commonly used by people with chronic pain. They work! For encouragement, subscribe to The Mighty. Knowing you’re not alone is part of good pain management. A healthy mental attitude is important.
Relentlessly pursue a diagnosis. Though you feel the absolute worst you’ve ever felt in your entire life, you are solely responsible for finding the experts who can tell you what’s wrong. If you don’t enter the diagnostic process determined to find answers and solutions for yourself, you will never find them. No one cares as much as you do about your health, not even your doctor. They won’t pursue you. You must pursue them. It’s all up to you. Remember this. Don’t give up.
Once you’ve found a good doctor, do what she says. Follow all her instructions. Take your medicine. Do your workout. Don’t stop.
Learn to advocate for yourself. Every time physical therapy, medication, and therapeutic massage were prescribed, I had researched it, knew why it would help my body, and lobbied for it. These all helped immensely, and I was glad I’d pressed for action. This goes hand in hand with asking for help from friends and family when you need it, also a hard thing to do.
Be brutally honest with your doctors. Learn to be assertive. Doctors only treat sick people. They themselves have probably never been as sick as you. Therefore, they don’t really know how you feel. Here’s a link describing exactly how I had to explain my pain so my doctor could understand and prescribe.
You have to change your vocabulary, so the doctor can understand you. Say, “I’m unable to function.” Do not use the word fatigue. Do not say, “I’m tired.” So are they. Say instead that you’re unable to accomplish all you used to do. They understand that. Tell them what you could do in the past compared to now. Bring a written record. When you’re motivated, they work harder to help you.
“Fire” doctors who don’t listen. A friend gave me an article from Self Magazine. That article changed everything. I learned that autoimmune disease has been declared an international women’s health issue by the WHO. I learned that all my weird symptoms were related to one another, and I found a doctor who could help with my diagnosis. From that article and the AARDA, I learned about Dr. Abid Khan.
I left the doctor who didn’t listen, and I made an appointment. Dr. Khan triages people from all over the country, helping them determine what they might have and getting them connected with the right doctors near their homes. If you can, go see him.
Avoid unsupportive people. If they don’t ask, don’t tell. It’s taking all your energy to visit doctors, to have tests, and to attempt to get well. You don’t need people around who aren’t supportive. You don’t need people who tell you that this is all in your head.
The people who are most concerned about you will ask how you feel, but remember this. These will offer help and encouragement. You need cheerleaders! If someone doesn’t ask specifically, I don’t confide about my health or bore them with the details, even if they’re someone I normally trust. Talking exclusively about our health to everyone we know is not healing. It’s debilitating in and of itself.
Hope and pray. My life is in God’s hands. Compared to five years ago, I’m much improved. It’s now obvious. Our prayers are being answered, and my hard work is paying off. But even now, some days I wonder if I can keep pressing forward.
Is my improvement permanent? I don’t know yet. Only time will tell. Many days I still feel crummy and must discern whether to press on or to rest. But those days grow fewer. I know God is with me, superintending my health for my good and his plans in the world. I rest in this, even if I relapse.
I hope that something I’ve written helps you or your loved one. For more about my battle with chronic illness, enter that term in my website search bar. Just click the green triangle in the upper righthand corner.