vague and open-ended. There is nothing too small, silly, strange, intense, or superficial to write down.
3. After ten minutes, stop writing, take a deep breath, and allow yourself a moment to process what you wrote. Read it over and notice if any points, either as you wrote them or now while you are reviewing them, cause a physical reaction within you. Do you notice any physical pain or sensations like heart racing, body tingling, stabbing, or lifting? Do you feel a knot in your stomach? Did you tear up at any point? Did you laugh? Feel embarrassed? Take note of the items that resonate most powerfully for you and circle them (it could be single words, phrases, or a particular paragraph). Any physical or emotional reaction is an indicator that you’ve put your finger on a raw element that you are ready to address and heal. The items you circled are the most potentially transformative issues in your life. Congratulations for having identified them.
4. Next, turn the page and draw a vertical line down the middle of it. Look at your circled items and find the ones that express something negative (it may be all of them, and that is perfectly okay). For each negative feeling or thought you circled, formulate a declarative sentence that expresses the issue. For example, you may have circled the phrase, “I don’t think this next treatment will solve anything and I’m close to giving up hope.” You would translate this into the simple sentence: “I feel hopeless.” If you wrote a bulleted list and one of the words was “sad,” turn it into the declarative statement, “I feel sad” or “I am always sad.” Write these negative sentences to the left of your vertical line.
5. When you have a statement for each of the negative circled items in the left column (perhaps it’s one or two, or maybe you’ve written two dozen—however it unfolds is exactly how it’s meant to be), go back to the top and consider the first statement. Think about what the exact opposite of that negative statement would be, and write it down in the right-hand column. For example, if you wrote “I feel hopeless,” the positive opposite could be “I have hope.” If you wrote “I’m afraid,” write “I’m brave.” If you wrote “Life sucks,” the opposite could be “Life is beautiful.” If you wrote “I’m tired and can’t take this anymore,” the counter might be “I am full of energy and can handle anything that comes my way.” Make sure you complete the whole list and come up with a positive counter statement to each of your negative sentences. You may notice as you write the opposite to each negative thought or feeling that a part of you can’t help but agree with the positive statement. You really do have hope. Life really is beautiful. You truly are strong. If you don’t feel the truth in any of the opposite assertions right now, that’s okay, too. Transformations don’t have to happen overnight. Simply allow your mind to absorb the positive opposites to what you originally expressed, and trust that your subconscious is listening. For now, just allow these positive truths to live on the pages of your journal. We will come back to them later.
Take Stock of Where You Are Now
In your journal, write briefly in response to the following questions. One or two sentences for each will suffice.
1. How easy, or difficult, was your diagnosis process?
2. For how long did you experience symptoms before you started getting answers?
3. What was it like for you when you were waiting for a diagnosis? What thoughts did you have?
4. How did you feel when you finally had a diagnosis?
5. How did your world change?
6. How do you feel, now, when you think back to that time?
The Wonderful Pieces of Divinity I Have Found
Humor is your friend.
•
Appreciate the little things.
•
Sometimes your mood comes down to a choice.
Do you want to be happy or sad today?
•
People help you as a way of showing love when they feel helpless against your disease.
•
You may not control your disease, but you control how you think and feel about it.
Therefore, you control your experience.
My road to autoimmunity is probably similar to yours or your loved one’s. I had countless environmental sensitivities as a child. Temperature changes, humidity, and barometric pressure changes affected me, as did chemicals in shampoos and detergents—even fabrics. I had respiratory infections, strange rashes, and excruciating muscle pains. I also found myself to be fairly clumsy. Aside from all those pesky inconveniences, I was a normal, physically active, energetic kid, full of life and zest for adventure. Does this sound familiar?
We had traces of autoimmunity in our family—a bit of arthritis and psoriasis—and there were various forms of cancer, but nothing so unusual as to indicate we were at higher risk than the general population.
In my second year of college, I contracted mononucleosis. Prior to being diagnosed, I was put on antibiotics, which triggered an allergic reaction that caused an all-over-body-rash the likes of which few have ever seen.
This event, the raging mononucleosis, was the final catalyst that took me from having an overly sensitive body, which made me a candidate for problems, to someone whose immune system went undeniably haywire. My immune system forgot what it was supposed to do (protect the body from germs) and went on the offensive (attacking itself) instead.
Over the next eight years, I saw numerous doctors and had many tests and various diagnoses before we settled on what they believed was the correct single diagnosis: juvenile-onset dermatomyositis.
The snippets of information I received from the pre-diagnosis doctors were big words like lupus, multiple sclerosis, muscular dystrophy, and cancer. During that time I was alternately called delusional, a hypochondriac, a liar, and an insomniac, or they said that I had only fibromyalgia—just to name a few. In the years since, and as understanding has increased, the qualifier “only” has been removed from any mention of fibromyalgia.
Have They Given You Meds, Meds, and More Meds?
I felt like a guinea pig being put on medicine after medicine to treat, or rather diagnose, the symptoms of the disease. More meds were needed to treat the side effects of the initial meds, and still more to treat the side effects of those. I saw some wonderful doctors as well as many others who clearly should have chosen a different career.
As a child I knew a woman who died in childbirth from undiagnosed lupus, so I was scared out of my wits. The prognosis for someone with lupus wasn’t good, yet I didn’t feel like I was supposed to die. The doctor my parents took me to said he wasn’t sure what was wrong with me. Possibly it could resolve itself and turn out to be minor. In any case, he wasn’t going to diagnose me because of my age.
