Everything Is (Not Always) Possible: Managing Hope and Expectation With Chronic Illness

Don’t tell people they can do the impossible. Tell people that they can do the possible that they think is impossible.

— Denis Waitley

This post was inspired by something I saw recently on social media concerning illness and expectations. The author recalled someone they knew years ago who’d completed a major endurance feat despite living with significant physical disabilities. Their achievement had reinforced in the author the commonplace expectation that “anything is possible” if you’re sufficiently motivated, no matter your situation or circumstances. They were ill-prepared for the reality. Life is often far more restrictive and restricted, especially for someone with energy-limiting conditions. They highlighted the lack of help and guidance for people with chronic health conditions who grieve the life they never get to live.

The post had been shared by Facebook accounts focusing on conditions including chronic fatigue syndrome (CFS/ME) and fibromyalgia, attracting a lot of comments from people who understood the scenario only too well. I passed the link to Fran, knowing it would resonate with her too. Her response was immediate and telling. “That’s probably why I won’t end up doing the Camino.”

Also known as the French Way, the Camino Francés is the most popular of the routes of the Way of St. James, the ancient pilgrimage route through France and Spain. It runs for 480 miles (770 kilometers) from Saint-Jean-Pied-de-Port in France to Santiago de Compostela. Fran has friends who’ve completed the Camino, which typically takes at least four weeks. Since she first mentioned it to me a year ago, we’ve talked about how and when she might attempt the walk, either in full or in part.

It’s not something to be rushed into and would take a lot of preparation. Physically, for sure, but also mentally and emotionally. Her reply suggested to me that she might have let go of the idea. This post isn’t about the Camino Francés as such. She may yet decide to, in which case we will have another adventure to prepare for and share. Rather, it’s about understanding what it means to live with long-term life limiting illness. It’s about understanding what that social media post represented for its author, for Fran, and for anyone who finds themself in a similar situation.

There are several aspects of this which are worth addressing separately

Grieving the life you won’t get to live

The post’s author spoke of wishing they knew “how the fuck to grieve the life you won’t get to live.” Grief and mourning are words Fran and I use frequently when discussing her life situation. The following is excerpted from a recent blog post exploring just these themes: Looking Out: An Open Letter to My Best Friend.

There’s another way of reading the photograph. The person inside the house is you, sitting in the dark looking out at the bright potential of the world outside. The woman on the lake shore is also you, but the person you might have been if life had been otherwise. Healthy. Fit. Free from pain and fatigue. Capable of anything she dares to dream. For all your achievements and adventures I know there’ve been times when your life has felt small, less than, more constrained than it might have been had illness not visited you. It’s hard to mourn a life you never had the chance to live.

Both of us have been exploring the broader aspects of grief, mourning, loss, and acceptance for some time. I shared some of this last year in posts including Letting Go of the Balloon: End of Life Planning for the Overwhelmed and How Much Do You Want to Know Me? Preparing to Write My Obituary. While those articles focus on navigating the passing of loved ones and preparation for our own eventual death, these are themes which are relevant to any kind of loss, absence, or lack. In addition to locally organised Die Well Death Education classes and Death Café sessions run by an experienced end of life doula, Fran has been attending a grief group. She finds the insights, wisdom, and support offered by these various gatherings extremely helpful in navigating the challenges of her life as well as preparing for its eventual, and natural, ending.

Grief in the context of mental health features in a quotation by American author and professor Adam Grant. “Mental health,” he wrote, “is not about being happy all the time. It’s about learning to handle the full range of emotions. It’s normal to feel grief after loss, anger at injustice, and fear in danger. Resilience lies in putting our feelings in perspective instead of letting them define us.”

“Anything is possible”

The assertion that “anything is possible” will be familiar, no matter our health or other life situation. In one form or another, we’ve heard it our entire lives. “You can be anything you want to be.” “Don’t let anyone or anything hold you back.” “You can do anything if you believe in yourself.” It’s so common a message that it slips beneath the radar of rationality. Masquerading as optimism and empowerment, it nevertheless defines the phenomenon of of toxic positivity, with a heavy dose of ableism into the bargain. Buy into it and you’re setting yourself up for a lifetime of frustration and disappointment.

Anything is not, in fact, possible

The reality, of course, is that our lives and possibilities are not unbounded. Anything is not, in fact, possible. On one level, of course, we know this. We don’t imagine it means we can fly unaided, or leap tall buildings in a single bound. The toxicity of the message is precisely that we know it doesn’t mean all things that are, literally, impossible. The toxicity lies in the contrary implication that things which are possible for any, or many, or most, are possible for all.

The post’s author knew someone who had completed a major feat of endurance, so they could certainly overcome lesser obstacles in their own life. On average, some 700 to 800 climbers reach the summit of Mount Everest every year, an increasing number with little previous experience. Perhaps Fran should ditch the Camino and go for Everest instead. After all, anything is possible, including the $40,000 to $60,000 it would likely cost. (Everest veteran Alan Arnette sets this in context: “What does it cost to climb Mount Everest? As I’ve said for years, the short answer is a car.”)

Recognising she will never summit Everest is not a huge disappointment to Fran. Acknowledging that “lesser” challenges might prove beyond her is harder to accept. This is the point the post’s author was making. Living with disability and illness, in particular energy-limiting conditions such as chronic fatigue syndrome (CFS/ME) and fibromyalgia, means accepting that things most of society regards as easy or trivial, require significant effort and determination. This is expressed powerfully in the lyrics of the song Small Victories by English singer-songwriter Roxanne Emery, performing as RØRY.

Stuck in this bed, fucking depressed all the time
Haven’t cleaned my teeth, haven’t washed these sheets in a while
I got good friends, but I can’t call them ‘cause those texts I’ve been ignoring
Wasting my youth inside this room
But I’m still standing somehow

Some people climbed Mount Everest today, and made history
While I was still asleep
Well, I got myself dressed today
Small victories
Small victories

I had that song in mind when I replied to Fran.

F: That’s probably why I won’t end up doing the Camino.

M: Maybe we each define our own camino. Maybe that’s what it’s really about.

We didn’t pursue the conversation further on that occasion, but it’s an ongoing reality for Fran, affecting many different aims, aspirations, and challenges. As I write, Fran is preparing to go away for the weekend with the Maine Outdoor Adventure Club (MOAC). It’s not the first time she’s been on MOAC trips or activities, but each time is a challenge on all levels; physical, mental, emotional, energy, planning, and scheduling. She wonders if she is up to it. If she will fit in. If she will enjoy it. Many of these questions and uncertainties are founded in the restrictions of a life lived with illness. She doubts herself at such times, but she is going nonetheless. That’s the kind of courage that I admire in Fran and many other friends who likewise know the restrictions of illness and disabiltiy, yet commit to living as full and rich a life as is, in fact, possible. Ahead of the trip Fran sent me a passage she’d found online.

Hard truth:

If you wait until you feel ‘better’ to start living, you might be waiting forever.

Go live your life. Do it sad. Do it anxious. Do it uncertain.

Because healing doesn’t always come before the experience.

Sometimes, the experience is what heals you.

I’ve been unable to trace the source of the quotation, but it’s very relevant.

Help and guidance

The post’s author wished they could find “a good book” that would help them navigate the challenges and disappointments of a life lived with illness. While each person’s needs are different, there are in fact many sources of information, help, and hope available. I’ve gathered a few resources here in the hope they may be of interest and value.

International Awareness Day for Chronic Immunological and Neurological Diseases (CIND)

May 12 has been designated as the International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS). You can find further information on these conditions and more on the May 12th website, Wikipedia, and on Facebook.

Also on Facebook, Tom Kindlon’s ME CFS & related page is a good resource, with links to his content on other social media platforms.

Roxanne Emery (RØRY)

Roxanne Emery is very open about the trauma and challenges she’s lived through and those she continues to live with. Through her music, interviews, and the content she creates with her husband Richard Pink, Roxanne offers a powerful message of realism, hope, growth, and achievement. Not anything is possible, but so much is possible.

They have published two books on living with ADHD: DIRTY LAUNDRY: Why adults with ADHD are so ashamed and what we can do to help and SMALL TALK: 10 ADHD lies and how to stop believing them.

You can find them on Facebook (RØRY | ADHD_love), Tiktok, Instagram, and other platforms.

Over to You

In this post I’ve shared my thoughts concerning life lived with chronic illness, especially conditions which are energy limiting. If this resonates for you, whether you live with such conditions yourself or care for someone who does, we would love to hear your thoughts, ideas, and experiences. What helps you or the person you care about? How do you or they handle the reality that not everything is possible? Do you have any other resources you’d like to share? Please comment below or find us via our contact page.

 

Photo by Chang Ye at Unsplash.