How I'm Reshaping My Hopes and Dreams After Chronic Illness Changed My Path

I have been thinking a lot lately about hope, and I have come to believe that hope is essential to life. When you think about it, most people hold onto hope on a daily basis, even if it’s not a conscious thought. You hope the weather will be good on the weekend, you hope the guy you met calls, you hope you get a raise at work, you hope traffic won’t be bad, you hope you get over this cold soon…

With hope we are constantly planting wishes in our immediate and distant future with the expectancy they will blossom.

This is why with chronic illness the loss of hope can be equal to that of the physical struggling. Pain can be pushed through if you have hope it will end. Isolation can be endured if you have hope of socializing again. We can endure much more than we can imagine if we have hope throughout: hope for healing, hope for a better future, hope for life as we wish it to someday become a reality…

When we construct our hopes and dreams they are built on a foundation of what we feel is possible. After all we do not tend to realistically hope for things that are not in the realm of possibility; I guess if we do we call them pipe dreams. But when long-term illness and passing years of struggling rob you of the possibilities that are still attainable for a “normal” person, how then do you dream? What does hope look like with the shifts in what is possible?

Of course, the first dream for many of those who have been sick for a long time is for health. And in my opinion, there are few things as painful as when that hope is squelched and snatched away from you.

Now chronic illness looks a little different for every individual. I am immensely blessed that I have come a long way in my six plus years of treatment since my Lyme diagnosis and there has been a lot of improvement. But the struggles continue and I may continue to struggle with autoimmune and other conditions for the rest of my life. So as my “younger” years continue to diminish like a fading horizon line, I have had to construct how to rebuild hopes that are now built on a different foundation, a foundation of what is possible for me now.

I had an emotional reshaping of my hopes with my last downturn in health, and a lot of the hopes I had been holding onto for many years got torn down; these constructs were apart of my reality, part of the paradigm that made up my world. These things (that in my mind) were apart of what life had in store for me. The realization of loss was a sickening sucker punch of reality that knocked me down flat. I had been living in that place of rubble for several months, and I had to basically go through a grieving process and lay to rest my virtual hope chest. Coming back out of the dark, it took a lot of questioning whether rebuilding the hope tower was worth it. Should I accept a state of apathy as my reality… live in the small little box that life has given me and never expect anything more? Or is apathy just another unhealthy coping mechanism that will ultimately rob me of even more life? Questions, questions… introspection.

Rebuilding hope.

At the time I mused: “Of course rebuilding my hope tower will look very different than before and be much smaller, but right now I’m not sure what to build it with. Or should I? Is that my job or God’s? Would He approve of my giving up on hope because it hurts too much to hold on?”

I have never stopped believing that my future and hope is in God, that He has a reason and purpose in everything He allows in my life, but what His plans are (obviously) are vastly different from anything I ever envisioned. I am looking at leaving my 30s behind the last day of this year and this doesn’t quite seem real. In my mind I’m still somewhere in my late 20s, waiting for all the things the normal progression of life will bring. In some ways life for the chronically ill is like a treadmill, running in place and never getting anywhere but expending energy all the same and there is no end to the exhaustion.

So friends, I have said goodbye to children and family, to independence, to financial stability, to being able to stop working (that takes all my energy, robbing me of having a life outside it), to success, to travel, to normalcy and all the perks that come with those things…. (at least in my own ability to achieve them).

But I’m still here. The scorched earth of where my hope tower burned down became the fertile soil to plant new hope for the future, both immediate and distant. I do have seeds I’m watering, and they are founded in deeper things and maybe are not all about me. They are seeds of faith. Seeds of love. Seeds of family and friends. Seeds of gratitude. Seeds of empathy for others. Seeds of a commission to my chronic illness community.

I’m still here.