Your Privacy, Your Chronic Illness & Your Job

Don’t let anyone fool you. When you live with a Chronic illness, you do a lot of thinking. You make a lot of decisions. Cool tee shirt aside, life really is filled with tough choices. And if you haven’t juggled many in your past, a Chronic illness will change that quickly. Which doctor do you trust? Which treatment do you choose? Which medication/s will work best? And aside from these obvious questions, you also wonder about your privacy. Yes, HIPAA is a great thing. And there are similar protections in place abroad, i.e. PIPEDA, Directive on Data Protection. But, outside of medical community, who do you share your illness with? Who do you entrust with that personal information? How much is, well, too much?

Let’s start with your family and close friends. They are usually part of your support system. And, yes, they need to know about your diagnosis. Especially, those who are closest to you. A strong support system will help you to manage your condition more effectively. Providing them with additional information is also helpful, i.e. the name of your doctor, your medications, etc. Next, is your workplace. And that’s an entirely different animal!

Legally, you are not required to disclose a Chronic illness to your employer. An employer hires you to do a job. If you are capable of doing that job, you are fulfilling your end of the deal. This also holds true, if you are seeking employment. On the other hand, some say the added stress of trying to conceal their condition was/is frustrating and difficult. There is no wrong answer, here. It really depends on what you are comfortable with. You may choose to discuss your illness with HR, but not your co-workers. That too is okay. Nobody wants to be gossip fodder for the break-room. This is about your health and your privacy.

Many patients learn what their group health plans offer, after they have been diagnosed. Better late than never, I guess. When you are living with good health, you are truly experiencing a blessing. But knowing your health coverage is also the peace of mind that will help you to sleep at night. Take a few minutes to actually get those facts. And if you have never taken the time to acquaint yourself with Labor Law, here are two key pieces of legislation to start with: The Family Medical Leave Act and the Americans With Disabilities Act. Living with a Chronic illness, you may need to use one or both at some point. Understanding them is crucial. Sadly, disability discrimination still exists in our society. And many Chronic illnesses can lead to a disability. If you ever feel your employer is harassing you, or is discriminating against you, due to your Chronic illness … you can contact the Equal Employment Opportunity Commission or EEOC. Know your rights. They exist to protect you.

Last, but not least, go out and LIVE! Don’t allow your disease to define you. It isn’t what you are, it is just a part of who you are. So, make plans. Work. Travel. Finish Grad School. Buy a home. Start a family. Set goals. Dare to dream. The choices are waiting and they’re all yours!

 

Reference Links:

https://www.hhs.gov/hipaa/for-professionals/security/laws-regulations/index.html

https://www.atlantic.net/hipaa-compliant-hosting/beyond-hipaa-international-health-data-protection-europe-canada/

https://www.dol.gov/whd/fmla/

https://www.ada.gov/2010_regs.htm

https://www.eeoc.gov/facts/ada18.html

https://www.eeoc.gov/laws/types/disability.cfm

*Photo by Jose Llamas on Unsplash

 

 

The Garden of Optimism: What is this place?

Did you ever find yourself wondering how life managed to lead, or drag, you down a certain path? Well, such is my case. When we find ourselves in such a predicament, we usually know how we got there. But sometimes we aren’t too eager to admit it. Still, there are times when life leads us into the middle of uncharted territory. Our reaction depends upon the circumstances, our perception of them and our willingness to take on the challenge. For me, personally, I am humbled and flabbergasted.

Throughout my entire life, I have always felt a strong sense of service — volunteering with various organizations, my church and within the community. But no one would have predicted that I’d become a blogger — including me. I’m not the most tech savvy person on Earth. I freely admit that. Still, God did provide me with a gift for words. One that I’m abundantly grateful for. And He molded me with a very tenacious spirit. So, why now? Why bother?

In all honesty, I have felt a calling. Divine, as from the Lord, but not in the pastoral sense. Persistent. Urging me. Whispering to my conscience. Telling me, of all people, that I need to reach out and do this (Matthew 5:16 NIV). I need to serve (1 Peter 4:10 NIV) others. I need to help them — to become their voice. So, here I am — a Patient Advocate.

I’m not a medical professional, though I’ve seen more than my share of them. I hold no degree in Divinity. My credentials are from personal experience. And, unfortunately, this is subject-matter that I know all too well. I have lived it, for decades.

By now, if you’re still with me, you may be wondering where all of this is going. Patience, Sweet pea. I’m a Southern gal. We sometimes ramble like ivy on an arbor, but we eventually get to the point …

Mine is that our lives are like gardens. For a moment, consider the similarities. There are beautiful, bountiful years. And there are meager harvests. All of the usual things can make growing difficult. The rocks. The lousy soil. Even the daily grind. Too much heat, or stress, is harsh on a garden. And it’s harsh on us, too. The rain, whether in drops or tears, can wash away our plants … our plans … our dreams … even our deepest desires. Then, there are the things that we least suspect. The ones that we never wanted. The ones that, we so often told ourselves, only happened to other people. And our gardens are never the same …

This blog is a place of refuge and support. It is devoted to those who are living with chronic illnesses and their loved ones. I understand what you are feeling. Your garden and mine share common ground. This is about accepting that no garden is perfect, but all have beauty and purpose. It’s about realizing the potential of your garden — finding it. This is about living, each and every day to the fullest in His light (1 John 1:5 NIV). It’s about enjoying the sun on our face and the blooms that we find. It’s about allowing our bodies and souls to dance. Yes, dance — even in the rain. Come … sit a spell (as we say down South) … browse the pages of this site (there’s more than one). Let’s talk. You aren’t alone.

 

Blessings,

Julia

 

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* Photo by Kaeyla McGee on Unsplash