Surviving The Hurt And Loneliness Of Chronic Illness

When you live with a chronic illness you take moments of joy wherever you can find them. But when you're sidelined for days and weeks on end it can lead to depression, anxiety, low self-esteem or even thoughts of suicide.

Joy can be a game changer.

"Start by doing what’s necessary, then do what’s possible, and suddenly you are doing the impossible." ~Francis of Assisi

Being constantly sick wears on your nerves. Your psyche becomes shattered. Watching the hours slip away while life moves on can leave you in a deep, black hole.

Social media digs that black hole even deeper. Threads of wonderful, fascinating, and inspiring activities being enjoyed by others create feelings of happiness for them, yet you feel empty inside. They are tasting that delicious slice of life you long for.

"Thank you, dear God, for this good life, and forgive us if we do not love it enough." ~Garrison Keillor

It's daunting to be chronically sick while trying to keep up a good front. It's easy to give in to despair, to allow a blanket of physical and emotional pain sweep over the joy you crave.

"There must be those among whom we can sit down and weep and still be counted as warriors." ~Adrienne Rich

It's hurtful when the phone stops ringing. Friends and family stop calling for a variety of good and bad reasons. No matter what the reason is, it hurts.

I've experienced all of the above while having MS. When the blues wash over me it's like having a nemesis show up at my front door.

"Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure." ~Marianne Williamson

Answer the door and walk on through. That's the only way we can get to the other side.

Talk therapy. Medications. Meditation. Advocate. Journaling. Yoga. Breathwork. Reading. Music. Quotes. Walking. T'ai Chi. Reiki. Communicating. Social interaction. Optimism.

These next two quotes sum up how I hope to feel after walking through my door. If you answered your knock I hope you'll walk along with me. Together we can find the joy that life has in store for us. It's hard work to get rid of the hurt and loneliness of chronic illness. But I promise you it's worth the effort. I'm reaching out my hand for you. I hope you'll be reaching back.

“We can feel isolated and powerless when living with chronic illness, but what if your story begins to bridge the barrier or open a way for someone to connect? What if your story offers a glimmer of hope to someone standing at the edge of desolation? ...What if your story starts the conversation?”
~Cindee Snider Re, Discovering Hope: Beginning the Journey Toward Hope in Chronic Illness

“She has fought many wars, most internal. The ones that you battle alone, for this, she is remarkable. She is a survivor.”
~Nikki Rowe

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.

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:

Reach out - A text or private message is nice but it's not the same as a phone call or old-fashioned snail mail card. Being chronically sick can be lonely. Feeling forgotten can be devastating. If someone's not feeling up for a phone call send a card to show you care. A friend of mine living in another state felt sad to miss the changing seasons. In the fall I gathered a bunch of beautifully colored leaves and mailed them to her with a card. It made her day.
Pay a visit - If someone is up to it giving the gift of time (in person, Skype or FaceTime) shows someone they matter. Schedule a convenient time and ask if you can bring anything. Be a compassionate listener. Let them know you care. A visit to someone in need can be just what the doctor ordered.
Offer to help - Ask if you can cook a meal or two, do their laundry, run some errands, drive them to the doctor. A helping hand can take a big weight off someone's shoulders.
Be consistent - Make a point of staying in touch. Follow up. Ask how they're doing. Stay in their life. Be a friend. Everyone is busy, particularly at holiday time. But the world would be a nicer place if today, right now, this second, you reached out to someone in need. Be that someone who makes the world a brighter place.

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.