Four Valuable Ways To Help Someone With Chronic Illness

Our broken souls fight what's naked to the eye. We're warriors wrestling with invisible battles. Our adversities strengthen us after winning arduous rounds of sparring with despair and uncertainty.

We combat illness every day with as much grace and dignity as possible.

We dream of living somewhere over the rainbow, to walk in Dorothy's shoes where black and white turns into color, and the world looks full of promise.

We long for a normal life.

chronic illness

Last week these thoughts filled my heart. Waiting to write about them here felt impossible so I created a short post on Facebook.

The response I received was overwhelming The outpouring of love and compassion made me feel less alone. Thanks to everyone who responded. You made a difference.

I wanted it to be a teachable moment. I hope it was.

Breaking yourself open to tell your truth isn't easy. You wonder if honesty will be a sign of weakness to your readers. But I believe surrendering to adversity and sharing it with others shows great strength and courage.

As the often quoted (by me) Elizabeth Lesser eloquently wrote in her book "Broken Open":

“Adversity is a natural part of being human. It is the height of arrogance to prescribe a moral code or health regime or spiritual practice as an amulet to keep things from falling apart. Things do fall apart. It is in their nature to do so. When we try to protect ourselves from the inevitability of change, we are not listening to the soul. We are listening to our fear of life and death, our lack of faith, our smaller ego's will to prevail.

To listen to your soul is to stop fighting with life--to stop fighting when things fall apart; when they don't go our way, when we get sick, when we are betrayed or mistreated or misunderstood.

To listen to the soul is to slow down, to feel deeply, to see ourselves clearly, to surrender to discomfort and uncertainty and to wait.” ~Elizabeth Lesser

But resting for weeks on end can leave you feeling lonely and isolated. You watch the world go by without the ability to join in.That can break your spirit into tiny pieces.

When that happens to me I have time to think. About aging and MS and what that will mean for me. About the future of healthcare in our country. About finances. About Medicare covering my revolving door of doctors. About whether I'll travel again and enjoy life as I once knew it.

And sometimes I wonder if the people I care about will go the distance with me through the worst, and best, of times.

When you lose pieces of yourself to illness these thoughts cross your mind.

If you want to know how we feel walk in our shoes a little. We don't want to be sick. We don't want to complain. We don't want to be different. We just are.

Here are four suggestions on making a difference in the life of a chronically ill person. Kindness and compassion are never out of fashion:

NOTE: This post is based on my experience of living with relapsing-remitting Multiple Sclerosis. There are four types of MS and mine is reported as the most common, least progressive type.

There are millions of people living with invisible illness, from Graves Disease, cancer, arthritis, chronic fatigue syndrome, fibromyalgia and many others that include symptoms like debilitating pain, fatigue, dizziness, cognitive dysfunction, brain injuries, learning differences and mental health disorders.

I don't have the corner on illness. Not even close.

I don't have all the answers. So I write what I know. I hope you let me know what you know. 

Thank you for listening.

chronic illness

 

 

Feeling Invisible Doesn't Have To Be A Lifelong Battle

Have you ever felt invisible?

You can feel invisible sitting in a room filled with voices that are louder than yours. No one hears you or looks in your direction. Ouch.

When we're younger we feel invisible and left out when we're not invited to a party or the mall with friends. Maybe we're invisible when a boy doesn't see who we are and asks someone else on a date. Double ouch.

 Invisible

But there's another way of feeling invisible. It's when you're fighting an invisible illness, one that's naked to the eye but is quietly serving you a double dish of struggles served on a silver platter every morning, noon and night. Silent, unrelenting and chronic.

Addison's Disease • Autoimmune Hepatitis • Bursitis • Cancer • Colitis • Crohn's Disease • COPD • Cystic Fibrosis • Depression • Endometriosis • Epilepsy • Fibromyalgia • Grave's disease • HIV • IBS • Lupus • Migraine • Multiple Chemical Sensitivity • Multiple Sclerosis • Myelofibrosis • Narcolepsy • Obstructive Sleep Apnea • Optic Neuritis • Polymyositis • Pulmonary Hypertension • Rheumatoid Arthritis • Scleroderma • Sickle Cell Anemia 

Two years ago I wrote about never being invisible despite living with an invisible illness. After being published in The Huffington Post it received even more attention all around social media and throughout the Multiple Sclerosis community. It's message was an important one and it also applies to everyone fighting an invisible illness.

WHOA! Network asked me to create a video for the sole purpose of reading my post. The video now sits on the sidebar of my blog. Its message expresses what An Empowered Spirit is all about: ability despite disability, and never being invisible.

My speaking voice is soft and not very forceful. There have been times when my words were not heard above the roar of the crowd. There have been other times when my voice was heard yet painfully ignored.

When I write it allows my words to spread my message for me, sprinkling themselves over others who are fighting their own struggle, or are looking to educate themselves about what living with a chronic illness feels like.

I vow to fight every day of my life, until there's a cure, to live the best life I possibly can. I do it for my son. I do it for my husband. I do it for my parents and for all of my loved ones who are in my corner every single day. I do it for the Multiple Sclerosis community and for the disability community.

And I do it for myself. Because I never, ever want to feel invisible.

Invisible

 

Thanks to Darryle Pollack for permission to use the WHOA! Network video.

 

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