Did you know, according to the Centers for Disease Control and Prevention, that nearly 50% of Americans live with a chronic disease and that 7 of the 10 leading causes of death in the United States are chronic diseases? Staggering, right?!?! I mean, WOW! With so many of us suffering, or at least knowing someone who suffers from a chronic condition, why aren't we all more aware? Why don't more of us do anything and everything we can to prevent or at least get early detection for these conditions? I'm going to go out on a limb and name one big culprit...denial!
"It can't happen to me." "I'm doing enough to stay healthy." "I'm not old enough to get that ." "Mystery Diagnosis is just a tv show talking about someone else's weird health issue." "I exercise so I'm good." "Doctors will know how to best treat me." These are the excuses I used to tell myself while awareness campaigns raged on, while I'd buy my pink swag to support a cause that was remotely related to me, and Mayo was just something I put on my sandwiches (sparingly cause I was a healthy kinda gal.) I thought I was aware of my family's health risks and knew what health conditions I could expect in the future...the way far old age future. But I was wrong. And I was not aware.
My sister Malinda, who's 9 years older than I, started having an odd rash on one of her breasts 4 years ago. Within 3-4 months of her rash appearance, I came on with a sudden and excruciating bout of lower abdominal pain and swelling that wouldn't go away. In my sister's case, her rash continued to develop and she was told it was mastitis and ointments will make it go away. In my case, I was told I had endometriosis and the most effective and permanent cure was a complete hysterectomy and it will go away. My sister passed away from Inflammatory Breast Cancer approximately 18 months later, and my hysterectomy has touched off an army of chronic conditions that only seem to be growing in number to this day. We were not aware.
I'm willing to guess that most people are only aware of long term health issues once they or someone they know and care about faces them. I thought I knew all about breast cancer because it runs in my family, but it turns out there was still lots to learn. I, and most of my doctors, couldn't tell you what dysautonomia or POTS or MCAS was before I had to battle it myself. So what does awareness mean? Does it mean you have to be a walking encyclopedia of medical knowledge at all times? Does it mean you should live your life in fear of contracting a terrible health condition? I've really been pondering this for awhile. What did I wish I was "aware" of before I got so sick? What do I wish I would have understood better, and taken to heart in my pre-POTS days? This is what I came up with...
- Got a health issue that runs in the family? Don't just buy the swag and gear, take time to learn the facts...they may save you or someone you love's life one day. For most chronic or life threatening conditions, early detection is key!
- Don't waste time with people who are negative and/or don't bring positive into your life. They will be the first to leave when you are sick.
- Doctors know a lot less than you think. Their diagnosis and treatment plans are based on their educated opinions and statistics. ALWAYS GET A SECOND OPINON!! ALWAYS!!
- You can't plan and control everything in your life. Be willing to be flexible, it will save you a lot of frustration and stress.
- Somebody has to be that person on Mystery Diagnosis. That someone can even be you.
- Many of the thoughtful things you do for others, they will do for you when you need it most. Keep up the good kharma.
- The majority of what you think is important in any given day, is utterly unimportant when you are sick. Try to focus on what makes your life meaningful every day, let the rest fade away.
- Healthy people get terrible illnesses too. But your healthy habits will be very helpful when you are fighting a devious condition.
- Slow down!! Listen to your mom, and take time to smell the roses.
- Don't wait till later to work on that Bucket List! Take that extra step to do something adventurous early and often, those memories will be comforting to you on the days you can't leave your bed.
- Always listen to your body...it speaks to you! If something doesn't seem right, keep fighting for accurate answers. Never give up on yourself! Never surrender to what the medical profession tells you if you are not convinced it is not right, accurate, and thorough. You deserve to always be treated with compassion, quality care, and respect!
I have few regrets looking back on my life to this point. The one thing I will always silently punish myself for and regret is that I never got a second opinion before my hysterectomy. I was in so much pain at the time, and put so much trust in a doctor that I didn't whole heartily believe in, and who's compassion was utterly lacking. I was blind and arrogant to how quickly poor health can enter your life. Whether you are the poster child of health, struggling to find a diagnosis, or battling for your life, you deserve compassion and competent care from your medical team. I wish I was more aware of that when I was healthier.
