Hi my name is Dr. Connie Jeon.
Last week I talked about ketogenic diet, the myths and truths regarding it, and how to navigate all the info you are bombarded with.
The key thing to remember is to find balance in the midst of chaos.
Today, I want to talk about my personal story with Lupus, so that it may bring some perspective and understanding for those of you who are living with a chronic illness, or are taking care of a loved one with a chronic condition.
Lupus happened to me at the peak of my life.
Because I viewed myself as the epitome of health, I was devastated when it happened to me.
I lost ALL sense of control and security, and it knocked me down to my knees with its mysterious symptoms, literally paralyzing me.
At the onset, most of my symptoms were physically deforming. From alopecia (severe loss of hair) to malar rash (butterfly shaped rash on the face- a classic characteristic of Lupus) and debilitating fatigue. It was an awful experience.
The FEAR of not knowing how my life will play out was the hardest thing for me.
Would I die? Lose all my hair? The rash….will it go away? And what about the fatigue….
Despite being a student at a renowned medical school, I couldn’t find satisfying information on Lupus.
All the research papers I found were confusing and not relevant to me. They were simply too complicated.
I wanted simple answers.
What does my life look like in the next 5, 10, or 15 years?
How debilitated will I be?
Can I work? Should I work?
Should I get my life in order and wait……for what?
Should I get married? Have kids?
Do I have a future?
What about my education, my life……what exactly do I do?
Let me tell you, it was scary and so confusing.
When diagnosed with a chronic illness, something happens to you. It changes you…..FOREVER.
To me, it felt like a death sentence.
I withdrew from my life. I was embarrassed of my physical deformities and I didn’t like the strange stares I got from people. I felt I was no longer myself. I felt alone and lost.
I felt I had hit rock bottom.
I had always lived my life with a clear plan up until my diagnosis. Now, I didn’t know what to do. I was stripped of my confidence.
From that moment, my life had become my experiment.
I didn’t like what the medical system had to offer me: corticosteroids, anti-malarials, and pain meds.
So began my experiments with Traditional Chinese Medicine, Qi Gong, macrobiotics, Gerson’s Therapy, Westin A. Price Foundation, raw food diet, juicing, herbal teas, yoga, pilates, and functional medicine.
I went against medical advice and had two kids. I paid for it with serious relapses, but eventually recovered.
Today, I stand before you, still with Lupus, but the only difference is that now I have it, it doesn’t have me.
The psychological burden of caring for or living with a chronic condition is almost a manic madness.
The anxiety and depression which arises from FEAR is not a fun thing, but a real issue.
Therefore, I’ve summed up 10 things you should be aware of when dealing with a chronic illness for yourself or for your loved one:
1. Sickness is sometimes madness. You don’t feel like yourself, so if you’re not pleasant to be around, its nothing personal. And don’t be too hard on yourself about it.
2. It’s really hard not knowing what your prognosis is, so be patient with yourself.
3. Sickness takes away the superficial identity that you’ve created for yourself. It will change you, but it can be for the better, giving you humility and empathy. It’s your choice.
4. What doesn’t kill you makes you stronger.
5. Doctors don’t have all the answers, and they don’t really know how you’ll recover.
6. It’s really up to you to be your best advocate.
7. You know your body best, and you are your best physician. Be mindful and learn as much as you can.
8. Doctors are experts on disease, but not health. YOUR HEALTH IS UP TO YOU.
9. Don’t buy into the “dogma” of a specific diet, treatment, or any holistic treatment. BALANCE IS KEY.
10. Meditation, physical movement, alkaline diet, and prayer DO help. I promise!
So with that, if you or anyone you know is going through tough a time with a chronic condition, please share this blog.
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See you next time!