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?

 

jose-llamas-_8hHDCRwFJc-unsplash

 

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

 

 

Advertisements

One Thing Can Lead To Another …

Dare I say it? Yet, if you are living with a Chronic illness, you know it’s true. Secondary conditions happen. In fact, by 2020, it is projected that 157M Americans will be living with some form of Chronic illness. And 81M, well over half of them, will have multiple conditions. But what exactly are these secondary illnesses? The list is long and complex, i.e. Depression, Anxiety, Lupus Nephritis, Pericarditis, Sjögren’s SyndromeCushing’s Syndrome, Secondary Raynaud’s, Secondary Fibromyalgia, Myocarditis, Anemia, Dysphagia, Glaucoma, etc. This isn’t about a low-grade fever, or stiffness. These secondary conditions are serious health problems, in their own right. And when they follow your initial diagnosis, it is both scary and frustrating.

 

kyle-glenn-uFjORuZQczQ-unsplash

 

Because of the sheer nature of how a Chronic illness effects a patient, from onset through progression, I want to focus for a moment on Depression and Anxiety. Both are common among the chronically ill. Life is changing. Physical and/or mental abilities are changing. To say that it’s overwhelming is, well, an understatement. The diagnosis alone usually hits a patient like a ton of bricks. Some chronic illnesses, i.e. Parkinson’s, Stroke, etc., actually effect the brain. These changes can directly lead to Depression. Anxiety and stress can also lead to depression. Both are felt by patients who live with any Chronic illness. And a secondary diagnosis can magnify these problems.

If you are experiencing symptoms outside the norm for your diagnosed condition, you should talk to your doctor. You may be living with a secondary illness. And it should be treated — not ignored. A good Support System will help you to cope with your Chronic disease as well as the secondary, i.e. family, friends, doctor, etc. Think of it as a “team sport”! Support Groups are available in many areas. If you are interested, you can contact national organizations for details, i.e. American Cancer Society, SAMHSA, American Lung Association, American Heart Association, The Arthritis Foundation, etc. Or simply ask your physician. These are very beneficial for caregivers, too.

Optimism is also key to living with and effectively managing your Chronic condition. Understand your illness — don’t just accept the diagnosis. If you want another medical opinion, ask for one. It is your body and your right. Learn the facts. Knowledge is power. Find out what you can do, i.e. diet, exercise, medications, etc. Pace yourself. Delegate tasks to reduce your stress level. Understand that setbacks can and usually do happen. Secondary conditions are common. Pursue preventative measures, if possible. If not, maintain your perspective. Blaming yourself isn’t going to help the situation. A Secondary Condition isn’t the end of the world. Let’s say that, again … a Secondary Condition isn’t the end of the world. It’s just a curve-ball that you must deal with. And you can. Millions of patients are doing it. So, give it your best shot! 

Always make the most of every day. Even the difficult ones are a gift. Although, they may not feel like one. With a positive approach, you will also feel better both mentally and physically. You will be able to manage the changes, too. And get back to living!

 

 

Reference Links:

https://www.nationalhealthcouncil.org/sites/default/files/AboutChronicDisease.pdf

https://medlineplus.gov/ency/patientinstructions/000602.htm

Secondary Conditions

http://www.jrheum.org/content/46/2/127

Managing Multiple Rheumatic Diseases: How One Patient Copes with Her Disabilities & Advocates for Others

https://www.cancer.org/treatment/support-programs-and-services.html

https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml

https://www.samhsa.gov/find-help/national-helpline

https://www.ncbi.nlm.nih.gov/books/NBK11438/

https://www.lung.org/support-and-community/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209342/

*Photo by Kyle Glenn on Unsplash

When Childhood Haunts You: ACEs & Chronic Illness

When most people are diagnosed with a Chronic illness, there is a moment of disbelief. On one hand, you are hearing the doctor. On the other, you just can’t wrap your head around it. As reality sinks in, fear and anxiety often accompany it. Life is, to say the least, changing fast. And at some point, rest assured, you will say, “How did this happen to me?” That’s a good question. But the answer may not be what you suspect. Chronic illness has long been attributed to things like an unhealthy diet, a sedentary lifestyle, tobacco use, alcohol, infectious agents, some environmental factors and genetics. But we also know that trauma, experienced before the age of 18, is linked to it as well.

chinh-le-duc-TV1QYUtTxJ8-unsplash

This trauma, known as an Adverse Childhood Experience or ACE, is an encompassing term for numerous traumatic experiences from childhood cancer to sexual abuse. Severe traumatic events are believed to have the greatest effect on our long-term health. The toxic stress that they create within a child’s body is consuming and powerful.

In fact, your risk of having mental and physical health problems goes up with the number of events that you have experienced. For example, your risk for health problems is much higher if you’ve had three or more of these ACEs:

  • physical abuse
  • sexual abuse
  • emotional abuse
  • physical neglect
  • emotional neglect
  • witnessing domestic violence
  • substance abuse within the household
  • mental illness within the household
  • parental separation or divorce
  • incarceration of a household member

Other traumatic events may not meet the exact criteria of an ACE, but still have life-altering consequences. For example, a car accident or school shooting can lead to health issues beyond the initial injuries, i.e. depression, anxiety, or post-traumatic stress disorder (PTSD). A 2010 study, published in the journal of Clinical And Experimental Rheumatology, noted that Holocaust survivors were twice as likely to have fibromyalgia than individuals who had lived in Europe during the Nazi occupation.

This does not mean that every Chronic illness can be linked to an Adverse Childhood Experience. It’s just not that simple. There are other variables. But we do know that the biological impact of childhood adversity is real. It can also be difficult, sometimes impossible, to reverse. Experiencing two or more ACEs significantly places a child at a higher risk for developmental, behavioral, or social delays. Sadly, it can even place them at a greater risk for committing acts of violence. And these risks follow them into adulthood.

If you are looking for answers as to where your Chronic illness came from, talk openly with your doctor. If you or your child has experienced an ACE, discuss that trauma/s candidly. It will help your doctor/s to better treat your condition. Whether you are the patient or a concerned parent, it just may offer some insight that can help you to understand, cope, even manage Chronic illness. With any Chronic disease, management is the key to better living. And it starts at home — with you!

May God Bless … 

 

Reference Links:

https://www.who.int/chp/chronic_disease_report/media/Factsheet1.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3153850/

ttps://www.health.harvard.edu/diseases-and-conditions/past-trauma-may-haunt-your-future-health

https://www.healthline.com/health/chronic-illness/childhood-trauma-connected-chronic-illness#7

Trauma-Responsive Schools Must Be the New Gold Standard in Education

Chronic pain and childhood trauma

*Photo by Chinh Le Duc on Unsplash

Friendship, Health & Healing

Friendships can be a mysterious thing. I’m not talking about those on social media. I’m talking about real friendships that involve shared life experiences. Some can, well … not be the best of choices. We’ve all had at least one of those. And they should be tossed like bad fruit from the fridge. But most friendships are wonderful, enriching relationships. So much so, that they are literally beneficial to our health and well-being!

omar-lopez-296944-unsplash

               “A friend loves at all times, and a brother is born for a time of adversity.”                                   — Proverbs 17:17 (NIV)

Friendships have a way of lifting us up, inspiring us and keeping us sane. That’s not my opinion. That’s medical fact. Friends provide social support, during difficult times. Talking with a friend is a way of coping, though we may not see it as such. That alone makes us more self-sufficient, resilient, etc. We are more hopeful — happier. Less lonely. Less stressed by whatever drama is unfolding in our lives. And that leads to less anxiety, less depression. We have better feelings of self-worth, purpose, etc. Overall, better mental health.

Friends can encourage us to live healthier. Friends share things like exercise, hobbies, even diets with us. Friends know our weaknesses. They understand our strengths. We understand theirs. We all benefit from a healthier lifestyle, i.e. weight loss, lower blood-pressure, more energy, better mobility, etc. If your Chronic illness is effected by one of these (and many are), imagine how much better you’ll feel. Friendships have this ability. The Journal of Oncology even published a study of women with breast cancer. Those who had 10 or more close friends were four times more likely to survive their illness than those who did not. Wow!

As we age, friendships become even more vital. Research tells us that seniors with an abundant social life are more likely to live longer. Being socially connected even protects the brain from developing dementia. That translates to a better quality of life — a healthier one.

So, stay in-touch. Re-connect with old friends. Get out and meet new ones. The effort is well worth it. And remember … quality friendships are more valuable than quantity. This isn’t a sports competition. If your “meeting skills” are a bit rusty, try these options:

  • Look for groups/clubs that have an interest or hobby you share. These groups are often listed in the newspaper or on community bulletin boards.
  • Volunteer at your place of worship, museums, community centers, charities, or other organizations. We can build strong connections when working with people who share our interests.
  • Invite a friend/acquaintance to have coffee, or go to lunch. They will usually return the favor. Accept invitations to social functions.
  • Start a new hobby, exercise, take a college class, etc. It’s a great way to meet people.
  • Go for a walk. Take your pet to a dog park. It allows you to interact with others and make new friends.

It’s never too late in life for friendships. In fact, their fun and rewarding. And, as we now know, they’re also downright healthy. So, go for it!

 

Reference Links:

https://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/friendships/art-20044860

https://www.psychologytoday.com/us/blog/nourish/201003/the-healing-power-friendship

https://www.mindbodygreen.com/0-12905/why-friendship-is-great-for-your-brain-a-neuroscientist-explains.html

https://www.anxiety.org/friendship-can-improve-mental-health

https://www.integrativenutrition.com/blog/2019/02/friendships-can-improve-your-health

https://www.webmd.com/healthy-aging/social-ties-16/rm-quiz-health-benefits-friendship

*Photo by Omar Lopez on Unsplash

 

Motherhood & Chronic Illness

I once saw a t-shirt that read “Motherhood: It’s more than a job, it’s an adventure!” And I had to buy that shirt. If you’re a mother, you understand why. Sometimes, I think we don’t fully appreciate our mothers until we become one. There is nothing easy about the detail. Motherhood is fascinating and scary … fun and frustrating … rewarding and overwhelming. Yet, I wouldn’t have traded the experience for the world. Some of my most treasured memories in life involve my child. When I look at him, today, I beam with pride. I did a good job, despite my Chronic illness. Though, back in those early years, I often wondered if I was measuring-up. Or if, heaven forbid, he was getting short-changed. 

 

100_2657

 

Let’s be honest; shall we? Motherhood is demanding. Chronic illnesses are, too. And, sometimes, what we want to do conflicts with what our bodies will let us do. Try explaining that to a toddler.

As mothers, we take care of our children. That’s the job. And it’s a 24/7 duty. When we are sick, our responsibility as a mother doesn’t magically go away. It’s still there — packing a lot of guilt. You learn quickly to have a “Plan B”, because that beats doing nothing at all. Think of it as a negotiation, between your condition and motherhood. For example, it’s a snow day. The flakes are falling. And your little one is just dying to play in it. A part of you wants to go, too. Unfortunately, you are aching … stiff … or worse. Reserve such times, for snuggling under a warm blanket … reading a stack of books … or watching a favorite DVD. Maybe, you can even pop some popcorn or make some s’mores (fireplaces do come in handy)? This too is quality time. Sledding can be done with Dad, or cousins. In a day or two, you might even feel like joining in the frosty fun. Until then, be patient. Make the best of the situation. Enjoy every moment — even if it isn’t your “Plan A”.

If you manage your Chronic illness, it will provide you with the best results for living life to the fullest — including motherhood. So, please, keep your appointments with your doctor. Take your medications. Eat healthy. Exercise. Yes, changes in your routine and/or your child’s will take some getting used to. That’s okay. Don’t beat yourself up about it. As strange as it may sound, our children learn from us even when we are sick. If we neglect our health, we send a negative message that tells them it’s okay to neglect theirs. When we take care of ourselves, we send a positive message. That’s a good thing.

Kids understand what “feeling bad” means. They understand terms like “hurt” and “tired”. And they will ask questions. When your child becomes inquisitive about your Chronic illness, be honest with them. Brief answers are usually best, for younger children. So, keep it simple. Teens are capable of understanding more. Then, of course, there is the internet where your child may read anything about your illness (factual or not). Prepare yourself for that, too. Help them find reputable resources online that can provide the best information. Talk openly. It’s good for them and you.

Last, but not least, stay positive. Optimism is key to managing any Chronic illness. It’s good for your health as well as your child’s. Kids aren’t as naive as we’d like to think they are. Our children pick-up on our emotions. If we show fear, they become afraid. If we are depressed, they too can show signs of depression. So, live fearlessly. Live strongly. Live fully. Chronic illness isn’t who we are. It’s just part of the package. We are women. We are mothers. And we are blessed. Happy Mother’s Day!

 

 

Reference Links:

https://www.washingtonpost.com/news/parenting/wp/2017/03/03/how-to-talk-to-your-child-about-your-serious-illness/?utm_term=.f8f4df873208

https://www.fmcpaware.org/why-does-mommy-hurt.html

http://www.igliving.com/magazine/articles/IGL_2013-08_AR_Chronically-Ill-Parents-Helping-Children-Cope.pdf

http://www.copmi.net.au/parents/helping-my-child-and-family/talking-about-mental-illness

https://www.nccn.org/patients/resources/life_with_cancer/talk_to_children.aspx

https://www.accu-chek.com/life/explaining-diabetes-to-your-children

http://talkaboutit.org/how-talk-your-kids-about-your-epilepsy-roger-cross-wendy-miller-phd-rn

https://www.webmd.com/rheumatoid-arthritis/features/ra-explaining-pain#1

https://www.ncbi.nlm.nih.gov/pubmed/23510498

*Photo of the author & her son at an airshow, Myrtle Beach AFB, 1992.

 

 

Smile: It’s Good For You

Sometimes, we overthink things. This is often true with Chronic illness. We overlook the simple, yet effective ways to help us feel better. Why is that? Are we looking for more difficulty? More expense? More drama? Surely, not. I think, just maybe, we are skeptical of simplicity. In this modernized society, we have somehow conditioned ourselves to believe that we need all the latest gadgets, gizmos, treatments and meds. We tell ourselves that if it’s “new”, if it’s advertised, then it must be better. Yet, in reality, we actually benefit from very simple things … free things … easy, natural things. And the perfect example of this is a smile!

 

eye-for-ebony-400376-unsplash

 

When you smile, you activate neural messaging in your brain and chemicals are released, i.e. Dopamine, Endorphins and Serotonin. Your brain is basically having a party and your entire body is invited to join the fun!

Smiling wards off stress. It relaxes you, if only for a few seconds. It lifts your spirits. You are happier. You feel better. That smile also lowers your Blood-pressure and your heart-rate. It can even relieve pain. Imagine that!

Each time you smile at someone (even a stranger) and they smile back, you both have created a symbiotic relationship. And both of you reap the benefits. In that moment that you exchange smiles, each of your bodies releases those feel-good chemicals into your brain. In those few seconds, both of you feel happier … more attractive … even more confident. This actually increases the chances of living longer and leading happier lives, in both individuals. And it wasn’t difficult or time consuming. Heck, it didn’t even cost a dime!

If you can share a little laughter, the benefits are even greater. In the short-term, a smile that ripples into laughter releases more of those feel-good chemicals … fills your lungs with oxygen-rich air … stimulates your heart and your muscles … relieves stress … and just makes you feel good. But in the long-term, it can improve your immune system … relieve pain … boost your mood … and increase personal satisfaction. Remember that old cliche, “Laughter is the best medicine”? As it turns out, there’s medical proof to back it up.

Now, granted, there are times when it’s hard to smile or laugh with a Chronic illness. But did you know that even a fake smile can trick the brain into releasing these feel-good chemicals? That in turn can have the same positive results on the body and emotions. So smile, even on the bad days — reap the benefits. In the long run, you’ll be glad that you did!

 

 

Reference Links:

https://www.psychologytoday.com/us/blog/cutting-edge-leadership/201206/there-s-magic-in-your-smile

https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-relief/art-20044456

https://www.nbcnews.com/better/health/smiling-can-trick-your-brain-happiness-boost-your-health-ncna822591

*Photo by Eye for Ebony on Unsplash

The Greatest Of These Is Love …

We usually talk about Chronic illnesses and treatment, management, awareness, etc. But, for a moment, let’s talk about others effected by the disease — family and especially caregivers. 

No matter the patient’s age, or the specific illness involved, a Chronic condition effects more than one. Family members must also cope. Some may worry about genetic factors. Others may feel guilty, if they live far away. A few may have difficulty accepting the diagnosis at all. Caregivers, God bless them, are juggling everything — the needs of the patient, the family, doctor visits, medications, work, etc.

It isn’t unusual for a caregiver’s life to be drastically changed, by their new role. Some will put their careers on hold — hoping for a return to normalcy in a short time. Others literally see their professional careers end, as the role of caregiver consumes every minute of their day. Many allow their own health and well-being to go on the back-burner. This often creates additional health issues (for the caregiver). Weeks turn into months … then into years. It takes a toll. The caregiver finds himself or herself doing things they had never imagined doing, i.e. administering shots, buying diapers for a parent, protecting the patient’s rights, or watching a child suffer with pain. There is nothing easy about being a caregiver. It is a very mentally, physically and emotionally challenging role. And previous experience in no way means that you are adequately prepared for being a caregiver, again. Each patient, each illness, is different. 

jordan-whitt-145327-unsplash

“And now these three remain: faith, hope and love. But the greatest of these is love.” —             1 Corinthians 13:13 NIV

Twice, in my life, I have had the privilege of being a caregiver. I use the word “privilege”, because in some ways it was rewarding, i.e. close-knit talks, deepened relationships, special moments, etc. It was also highly stressful and at times downright scary. My first experience as a caregiver was for my father, 1989-1990, as he battled cancer. The second for my mother, in 2008, when she battled cancer.

Despite the common denominator, they were two vastly different experiences. My father was terminally ill, upon diagnosis, with lung cancer. He ate anything that he wanted and pretty much did anything he wanted, until his death. No medications to administer (seriously). No use of oxygen (seriously). His radiation treatments also went well. He truly lived every moment of life to the fullest. We should all be so lucky. I realize that, now. But at the time, I lived in high anxiety of what might happen. My mother was just the opposite. With Mom, everything that could go wrong … did go wrong. I charted over 20 medications, daily. She had every unusual side-effect to chemotherapy that a patient could have. No nausea or hair-loss (seriously). In the end, she was beating the cancer but succumbed to the worst of these side-effects (a pulmonary embolism or blood-clot). It was frustrating and heart-wrenching. The last thing that she asked of me was to sing. So, I sang … and sang … as she drifted into an unconscious state … gasping for every breath. I would rest for a couple of hours and start singing again … tears streaming down my cheeks.  Then, I’d pause … pray hard … and sing some more. This went on for 10 days. And by the grace of God, I managed. I was with her, voice and all, till the end.

If you know a caregiver, then you know the love that he or she so unselfishly gives. You may know a few of the burdens that they are carrying, i.e. responsibilities to the patient, their family, their job, etc. You may even know some of their fears. So, please, let them know that you care. Offer to sit with the patient, for a couple of hours. Ask if there is an errand that you can do for them, i.e. pharmacy, supermarket, etc. Drop by with a warm casserole for dinner. It may sound silly, but you’ve just taken a task off of their “to-do” list. You have lightened their load and offered support. Many caregivers will never ask for any help. They have their reasons. And, often times, they will neglect themselves before they do. But you can give them the little boost that keeps them going. Because without that caregiver, rest assured, things would be much worse.  So, give them a break … a hug … show your appreciation … share some love. They need it, as much as the patient does!

 

Reference Links:

https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/caregiver-stress/art-20044784

https://caregiveraction.org/resources/10-tips-family-caregivers

https://www.nia.nih.gov/health/taking-care-yourself-tips-caregivers

https://www.stoptheclot.org/about-clots/faqs/faq-blood-clots-cancer/