Holding Out Hope When the Chronic Illness Journey Is Long


One of my favorite metaphors for life, however cliche, is of life as a journey. Having a chronic illness, especially young, is its own journey, and sometimes the legs of the journey can be longer than expected.

Yesterday, I had one of those times. I had a first appointment with a neurosurgeon two and a half hours away from where I live to meet about my Chiari malformation. I had built up this appointment in my mind as the End of the Road, but it ended up being an overly quick appointment. The surgeon seemed very competent, kind and well versed in Chiari, which was great, but he wanted to be cautious and order more specialized tests before scheduling surgery. Since I had gone in expecting a surgery date set, this was initially a huge disappointment, even though logically I know I need the testing and this doctor is exactly the kind of doctor I want: the kind that is willing to be cautious and order the right testing before jumping into a procedure.

I know firsthand how sometimes my desperation for answers and timelines and treatments on my chronic ilness journey leads me to cling to things that are not best for my overall health journey. In July 2016, for instance, I thought I had finally reached the end of an arduous diagnosis journey, and I was diagnosed with fibromyalgia. But it turned out to be a misdiagnosis.

After dealing with that, and treatments that ended up being counterproductive to the Ehlers-Danlos syndrome I really had, I am slowly learning to embrace the journey and the fact that, since these are lifelong, incurable illnesses, this can’t be anything I can rush. It needs to be the right steps on the journey, and I need to be patient so that the journey can take those right paths.

As validating and comforting as answers and timelines are, the rational part of my brain reminds me that I don’t want answers, or timelines, if they’re the wrong ones.

One of my favorite stories on The Mighty, written by fantastic contributor Nikki Albert, was written just over a year ago, and I believe I read it when it was first published, when I still thought I had fibromyalgia, the topic of the story. In the article, titled “Why Those of Us With Fibromyalgia Should Embrace Being Turtles,” Albert writes about the importance of a slow-paced, turtle-like lifestyle for those with fibromyalgia: which certainly applies to those of us with similar chronic illnesses as well.

Albert discusses how the world can often seem intensely fast-paced, a chaotic rat race, but that those of us with chronic illness can and should, for our own health and wellness, choose a new way to live. This “way of the turtle ” is slower paced, filled with self-care and not comparing oneself to healthy people. She also talks about the #1 lesson I learned in 2016: not basing your worth on what you do, but rather who you are. And since I practice a Christian worldview, for me this means basing my worth in who I am as a child of God, not on any earthly accomplishments.

Not only should I embrace being a turtle and pacing myself with everyday activities, I also have to remember that the pace of chronic illness treatment – the pace and length of this chronic illness journey I’m on – is going to be different.

I have sometimes wished through the years, on the hardest days of my chronic illness journey, that I had something “more serious”: that is to say, something that sent my medical teams into what I see as more action. I haven’t thought this because I think those illnesses that are treated like emergencies are easier: on the contrary, I am sure they are extremely difficult and full of challenges I can’t imagine from this vantage point of having never experienced them.

All it means is that on those hard days, I sometimes long, if I have to be sick, for an illness to which there was a clear treatment plan, and treatment was done expediently, rather than at the turtle’s pace life with Chiari malformation and hypermobile Ehlers-Danlos syndrome often feels like.

But some of the best advice I’ve gotten this year is that “nothing good can come from dwelling in ‘what ifs.'” I do not live in some hypothetical alternate universe, and never will: I live here, in this world, in this body, and this is the hand I’ve been dealt.

So, my advice to my fellow “turtles” on a long, winding chronic illness journey, that seems to be just getting longer day by day, is this – which is also my advice to myself: for a long journey, pack hope.

Hope, as I’m choosing to use the word, means living with the faith, expectation and trust that things will continue to progress and continue to get better, even when they seem very hard. Since I am a Christian, my hope comes from believing there is an author of my story – God – who is much bigger than me.

After my initially-disappointing appointment this week, I am choosing to pack this new outlook for the journey. So what are some practical ways I am choosing to pursue hope?

In a recent post, I wrote about my scripture habit that helps me as very intentional self-care. I use the YouVersion Bible App and have read through many, many of its devotional plans. One of the most helpful features of this app is you can search for plans using a keyword. So I was specifically searching for plans based on the life of Joseph, as I talked about in my last post. So right now, I am reading through as many plans about hope as I possibly can. I cling to all the scriptures and promises I can about hope. I also am reading reassuring quotes about hope, and these all serve as lights for my journey.

Another helpful way of keeping hope, for me, is looking over the topography (using the journey metaphor) of my illness journey so far and seeing how far I’ve already come. A popular phrase I hear a lot in parenting is “the days are long, but the years are short.” This is true in my chronic illness journey as well. Certain days seem unbearably long, but the amount I’ve journeyed in just a year and how much more I know now is impressive. And that gives me hope that a year from now, I’ll be looking back on this leg of the journey and have a brand new perspective.

A third way I am choosing to pack hope for my journey is by not traveling alone. My next post for my blog will likely be about building an intentional support system with chronic illness when you have moved away from your hometown. I need to be intentional in sharing my journey, which is why I am very public about my health struggles, and talking honestly about it with friends and family. Isolation leads to hopelessness. My support system carries hope for me and helps me carry this hope for myself.

Finally, my fourth tip I’ve discovered in the few days I’ve been choosing to intentionally embrace having hope along the journey is to smell the flowers along the way. I am learning to enjoy the little things in life more, instead of obsessing over things like what’s to come next on my treatment journey. Living in and relishing the beauty of the day to day helps give me hope, too (more practical posts on how I do this are in the works!).

Notice that never once in this post did I say a chronic illness journey is easy, nor is it something I believe you have to be Pollyanna happy about. I can’t always choose where I’m called to journey with my chronic illness, but I can choose what to pack. And starting now, I’m packing hope.

This story was originally published on Writer Kat.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via kieferpix.

TOPICS
JOIN THE CONVERSATION

Related to Arnold-Chiari Malformation

woman lying on her back in bed staring at the ceiling

Trying to Live My Life While Awaiting Medical Answers

This post has sat, a quarter-written, in my drafts folder, for over a week now. It’s not the first time a blog post has languished, but it may be the first time that avoiding a post has scared me away from writing entirely. You see, I am in a season of waiting. Waiting for answers, [...]
Woman looking out of window in home, rear view

When Things Need to Be Pushed Back for My Health to Come First

So much of life is about prioritizing. There is limited time in the day, and while I believe it is possible to accomplish a lot, I don’t think a lot can often be accomplished at the same exact time. Sometimes, things have to be set down, often unexpectedly, so other things can be prioritized. But [...]
drawing of eggs comparing normal brain skulls to brain skulls with chiari malformation

How I'm Raising Awareness for Chiari Malformation This September

September is Chiari Malformation Awareness Month, as well as Chronic Pain Awareness Month. I experience chronic pain due to both my Chiari malformation and my Ehlers-Danlos syndrome (which has its own awareness month in May). I will be writing a separate post for Chronic Pain Awareness Month on my own experience and relationship with chronic [...]
woman leaning against a tree

When I Lost 18 Years of Memories After a Surgery

Memories can be a funny thing. “How do you just completely forget everything?” is usually the first question asked when someone finds out I struggle with amnesia. Amnesia is one of those things where we always think, “Well, it’ll never happen to me.” Well, it did happen to me.  I was 18 when I was diagnosed with [...]