A Lonely Garden …

A little solitude can be a wonderful thing. It allows us to rejuvenate and pamper ourselves … dream … even take a snooze. If you’ve ever taken a quick escape to a garden bench … a porch swing … a hammock … a lake house, etc., then you know what I mean. It’s nirvana.

Unfortunately not all loneliness is planned, welcomed, or even short-term. Call me melodramatic, if you must. But there is a loneliness that can come ever so easily, when you live with a Chronic illness. It slips over you — like a fog rolling in. And it’s unlike any loneliness that most have ever experienced. Why? Because it isn’t sought, or expected. It just seems to hit you, with the speed of a sucker-punch. In part, I think it comes from the lifestyle changes that the disease creates. How family and friends react to your diagnosis can also be a factor. How you accept your condition, its restrictions, etc., can be another. Everyone’s life seems to move on. And yours seems to hold you back. At its worst, this can lead to Social Isolation. And somewhere in the midst of it all, you’ll probably find Depression.

aaron-burden-38406-unsplash

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” — 2 Corinthians 1:3-4 (NIV)

Most of us are familiar with loneliness, because we’ve all experienced it at some point in our lives. Many times, by choice. But this isn’t that. Social Isolation, by medical definition, is “A state in which the individual lacks a sense of belonging socially, lacks engagement with others, has a minimal number of social contacts and they are deficient in fulfilling and quality relationships”. It is often associated with Seniors, especially those who live alone. But it isn’t confined to that age group. Depression, by medical definition, is “An illness that involves the body, mood, and thoughts and that affects the way a person eats, sleeps, feels about himself or herself, and thinks about things.” Like Social Isolation, Depression can occur at any age.

When a person is diagnosed with a Chronic illness, a second condition sometimes presents itself. Many patients have multiple Chronic illnesses. Juggling these conditions, symptoms, medications, etc., can lead to emotional and mental health issues. Social Isolation can be a facet of Chronic illness. Depression can, too. And loneliness plays a role in both. In fact, loneliness can be as bad for patients as the Chronic illness that they are living with, i.e. COPD, Epilepsy, Fibromyalgia, Rheumatoid Arthritis, Diabetes, etc. This is why a good support system is so vital for every patient. Some will find that social media is helpful, in filling the void. Others will tell you that it is even more depressing. Studies have actually made the same conclusions — helpful to some, harmful to others. So, what should we do?

If you have been diagnosed with a Chronic illness, you know how your life has changed. Still, living each day to the fullest should remain a priority. It’s important for you to stay socially engaged. How you do so may change, but participation is key. Your support system can help with that. Faith can also be comforting and empowering. Sometimes, just a little conversation on the porch is a godsend. How about a walk? A movie? Maybe, a pot-luck supper with friends? Or a phone call? And if your illness has impacted the clubs, sports, etc., that you once actively enjoyed … don’t allow it to get you down. Millions can relate to what you are going through. They too have made adjustments. So, please look for new options. I assure you, these alternatives do exist.

Chronic illness, as odd as it may sound, can actually open the doors to many positive experiences. But you must be willing to try them. If you need ideas, talk to your doctor. Go online. Many community groups and churches offer options, too. Explore a few. Instead of pulling away from life, be willing to do something new. Get involved. Connect with others. Make some new friends, along the way. It’s healthy. It’s fun. It’s an awakening, of sorts. A chance to find new talents and satisfaction. Your garden, or life, doesn’t have to be desolate. It can be a place of wondrous discovery, despite your health condition. No illness, or age, should be allowed to define you or me. Nor should it be allowed to rob us of fulfillment and happiness!

 

Reference Links:

https://www.medscape.com/viewarticle/769914

https://www.medicinenet.com/script/main/art.asp?articlekey=2947

https://www.mwhealth.org/Portals/0/Uploads/Documents/Understanding_Social_Isolation_Chronic_Conditions.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1070773/

https://www.theguardian.com/society/2017/oct/12/loneliness-as-bad-for-health-as-long-term-illness-says-gps-chief

https://www.psypost.org/2015/02/study-discovers-new-link-chronic-disease-social-isolation-31691

https://www.psychologytoday.com/us/blog/talking-apes/201801/does-using-social-media-make-you-lonely

https://www.psychologytoday.com/us/blog/the-antidepressant-diet/201706/social-loneliness-may-make-the-depressed-even-more-so

https://www.cnbc.com/2015/12/07/many-doctors-cant-manage-multiple-chronic-conditions.html

https://patient.info/doctor/social-isolation-how-to-help-patients-be-less-lonely

* Photo by Aaron Burden on Unsplash

Advertisements

A Patient Has Rights

When you or a loved one is sick, there’s a lot to juggle. Tests. Medications. Sometimes, surgical procedures. There’s endless questions to ask. Answers that are desperately needed. And no matter how earnestly you address this upheaval, you are bound to forget something. In healthcare, your crisis is just another day at work. But for you as well as your loved ones, it’s life-altering. Scary. Often times, it may seem easier to just nod and follow along. You may find yourself even doing so, despite the concerns that are keeping you awake at night. Perhaps, you just don’t want to make a fuss? Appear difficult? Take up too much of the doctor’s time? Anyone who has ever been diagnosed with a Chronic illness understands your hesitation, confusion, fears. You want to get well — not make waves. But this isn’t Obedience Training for a new puppy. This is your life — your health. And you have rights. It’s important to know them! 

 

mariano-rossi-321268-unsplash

Back in the summer of 1970, a grass-roots organization called The National Welfare Rights Organization (NWRO) drafted a document of 26 requests regarding healthcare treatment. This became the first Patient’s Bill of Rights. Their action came on the heels of a revision to hospital standards, by the Joint Commission on Accreditation of Hospitals. After several months of negotiation, many of the requests were included in the revised hospital standards by JCAH. In 1972, the American Hospital Association adopted a Patient’s Bill of Rights for operational use. By 1988, all 50 states had adopted a form of the Patient’s Bill of Rights to protect patients. The American Medical Association (AMA) followed suit, a year later. In 1992, the Patient’s Bill of Rights was acknowledged Federally and updated. Another revision took place, in 2010, on the Federal level. And most recently, at the Federal level, a revision was added this year to include the “Right To Try” for terminally-ill patients. 

According to the World Health Organization (WHO), most nations have a form of a Patient’s Bill of Rights that stem from the Universal Declaration of Human Rights (1948). They may vary slightly, but all were created to protect the patient. This is something to remember, when traveling abroad.

Yet, despite these many actions, Patient’s Rights are still violated. In 2016, the National Institute for Patient Rights (NIPR) conducted a study to see just how well the system works. Their findings comprised a list of the Top Ten violations of Patient’s Rights:

  • The failure to communicate
  • Adequate presentation of treatment options.
  • A lack of respect for advance directives.
  • Miscommunication.
  • Conflict between medical team & patient/advocate.
  • The right to know hospital charges and payment methods.
  • The right to review the patient’s bill.
  • Knowledge of hospital resources, including the complaints & grievance process, patient representatives, or ethics committee.
  • The right to know the identity & professional status of those working on the patient.
  • The right to review medical records, account information, etc.

It’s difficult trying to juggle the overwhelming news of a diagnosis, treatment, etc. But the process will be easier, in the long run, if you aren’t afraid to ask questions. Patients have rights. It’s a matter of professional ethics and law. Caregivers, advocates and/or family members can help by discussing a patient’s concerns with them. Make notes. That way, questions will be answered to the satisfaction of the patient. And if they aren’t, take action. Your health, or the health of a loved one, is too precious to leave to chance.

 

Reference Links:

https://www.law.cornell.edu/cfr/text/38/17.33

http://www.nationalhealthcouncil.org/resources/nhc-publications/principles-patients-rights-and-responsibilities

https://legal-dictionary.thefreedictionary.com/Federal+Patients%27+Bill+of+Rights

https://www.cms.gov/CCIIO/Programs-and-Initiatives/Health-Insurance-Market-Reforms/Patients-Bill-of-Rights.html

http://thehill.com/policy/healthcare/104767-president-obama-unveils-patients-bill-of-rights

http://thehill.com/opinion/healthcare/389514-right-to-try-is-a-win-for-patient-rights-and-president-trump

http://techfeatured.com/automotive/1430/patient-rights-top-ten-list-of-most-violated

https://www.encyclopedia.com/science/encyclopedias-almanacs-transcripts-and-maps/patients-rights-i-origin-and-nature-patientsrights

http://www.who.int/genomics/public/patientrights/en/

* Photo by Mariano Rossi on Unsplash

A Time To Laugh …

When you are diagnosed with any form of Chronic illness, it’s no laughing matter. On behalf of those who have experienced the situation, I can assure you that it’s pretty sobering. One might even call it a come-to-Jesus moment. Life suddenly isn’t as easy as it was, in the past. It’s harder. Scarier. For some, their faith becomes stronger. For others, it’s when faith is sought. The unknown has a way of diminishing one’s ability to smile, let alone laugh. Yet, Scripture teaches us that there is a time for everything — even laughter. And modern medicine has actually proven that it’s good for you!

 

priscilla-du-preez-105714-unsplash

“There is a time for everything, and a season for every activity under the heavens …”                                                                      — Ecclesiastes 3:1-8 (NIV)

 

Laughter has the wondrous ability to heal and renew the body. When you laugh, it enhances your intake of oxygen. It stimulates your heart, lungs and muscles. Laughter increases endorphins in your brain. It even burns calories. And all of this helps you. With every giggle, you will relieve tension … fight stress … and relax. But that’s just the short-term benefits!

In the long-term, laughter improves your immune system. It helps to relieve pain. And it increases your level of personal satisfaction. Laughter improves your mood — including your outlook on life. You might even say that laughter sows seeds of optimism. And we all know how essential that is, when living with a Chronic illness. Laughter improves your relationships. It aids in good mental health, i.e. providing joy, relieving anxiety and strengthening resilience. A study conducted in Norway even found that people with a strong sense of humor outlive those who don’t laugh as much!

Today, the medical community is embracing Humor Therapy, also known as Complementary Therapy, to assist in the treatment of many Chronic illnesses. This therapy implements the use of laughter exercises, comedy movies, books, games, etc., to help patients cope with their disease. This has proven especially useful for Cancer patients. So, consider the benefits. 

Life is precious. And any Chronic illness is serious. But laughter really is good medicine. Indulge in it. Tell a joke. Watch a funny movie. Smile and giggle your way through a good book. Laugh. There’s no better time for it!

 

Reference Links:

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

https://www.helpguide.org/articles/mental-health/laughter-is-the-best-medicine.htm

https://www.cancer.gov/publications/dictionaries/cancer-terms/def/humor-therapy

https://greatergood.berkeley.edu/article/item/how_laughter_brings_us_together

* Photo by Priscilla Du Preez on Unsplash