My Tips for Managing the Isolation of Chronic Illness

Prior to getting sick, I was an extrovert’s extrovert. I was a people person who got my needs met by being around people. When my energy was flagging, I was typically recharged by (you guessed it) being around people. I have basically zero amount of social anxiety. In fact, if there is such a thing as solitude anxiety, I have that. As a child, I shared a room with my sister. When faced with tasks to do by myself, or afternoons when she was gone and I had to accomplish things like chores or other organization-based tasks on my own, I would build dread about the task and the time spent alone. I would imagine the time stretching out before me, passing at a glacial pace, me – lonely and working at the task while never quite accomplishing it. Such was the way I looked at solitude and what I considered to be “unpleasant” work.

As I’ve discussed in other posts, getting sick, while it is, in many respects, a singular event, unfolds in new and varied ways over time. The initial sickness was something I thought I’d recover from, so I didn’t know to dread it or see it as the world-altering event it was and subsequently became. Then, there was the shape-shifting difficulty of not having an illness that was easy to pin down or diagnose. There were so many days I was left wondering if it was all in my head, or whether I was sane or credible since tests couldn’t identify my illness. And, over time, as I wasn’t able to do much of anything but be sick, what caught up with me was isolation. Unable to keep up with work, friendships, volunteerism, activism, community participation, going out, having a social life. This social butterfly — this empath who more often identified more with the impact she had on others than with her own feelings and experiences, was left with nowhere to go but bed.

Now, those of you who know me or have kept up with me here know that I have never been truly alone. Not just for the woo-woo reasons that I believe that none of us are truly alone, but also because throughout this ordeal I have had the faithful and loving companionship of my wife and partner. That is something so mind-blowingly amazing I cannot fully express what a gift she is and how much of our world she carries on her shoulders. And, compared to the life I was leading, I have experienced solitude unlike anything that came before.

For the better part of two years I lived with meningitis (a side effect of a medication that was saving my life) and had to be in silence, darkness, and stillness, propped at a 45-degree angle and alone. Unable to tolerate touch, light, sound, and company, I had to learn how to befriend myself and become acquainted with solitude like never before. At first, the experience was terrifying. It was scalding to be alone and in so much pain. I felt raw, like the exposed skin of a cuticle when a fingernail has been ripped off. With time, practice, and a whole lot of accumulated self-love, I did learn how to transform the experience. That, however, is jumping into the deep end without having ever been in the water before. I wouldn’t suggest throwing someone in like that. Instead, I would lovingly give you swimming lessons, my dear.

With that in mind, here are some of the basic strokes to managing the loneliness and solitude that often accompany chronic illness. First, break your day into bite-sized pieces. In the movie “About a Boy,” the main protagonist, Will, decides that days can best be spent in 30-minute chunks of time: taking a bath 2 units, watching a favorite show 1 unit, etc. I am typically in bed for 10 – 12 hours overnight and generally lay down for a rest each day. Often thinking about how to spend a whole day can feel daunting or overwhelming, but when I think about taking things apart and spending time in units (particularly if it’s an activity I don’t enjoy – like filling out paperwork, following up on medical phone calls or any kind of customer service runaround) can make the day seem more manageable. For me I think, “if I have 8 units before my rest and 8-10 units after my rest, how do I want to spend my time today?”

Writing letters is an old-fashioned thing that makes me feel good and helps me deal with the solitude of my circumstances. For you, perhaps this is texting, writing emails, participating on social media, or some other equivalent way of connecting. My mother was a letter writer, and habit also makes me feel connected to her (she passed a couple of years ago). Because I can write a letter at any time of day, this one does not require anyone to be awake when I want to do it. I can pick it up and set it down as I need to. While it is one-sided, I can still respond to the things I know are relevant in the life of the person I’m writing to, and in a world where my body allows me to do so little caregiving, this feels like a way to reach out and show my love and care in a tangible way. There are times when I’m too shaky or too arthritic to write, but otherwise, I try to write a letter or postcard every few days.

Having pets. I know there are a whole host of reasons why this one isn’t an option for everyone – from allergies to expense and care. If I was on my own, I don’t know what would be possible on this front. Currently, we have two dogs and they bring me more joy than I can fully express. Those of you who are/have been pet owners have some sense of this. There is nothing quite like the uncomplicated, unconditional love we get from our four-legged companions. When I was at my sickest, we only had Deli, our large (75 lb.) dog and I told my wife I needed a lap dog. Then we rescued our second dog, 12 lb. Mabel. The two of them together are hilarious, and the little one is small enough that I can pick her up, snuggle her, and get a lot of comfort from her physically on all but my worst days. They do seem to know when I need extra love, when I’m feeling low, and when to turn on the charm.

Finally, you are not alone. No matter how rare your rare disease is (I have something called antisynthetase syndrome – ever heard of it?) there are others out there who do have it. You are not alone. You can join a Mighty group to read about others who are going through the same things you are, to get recommendations about things others are trying, to find out what medications are working for them, to know what doctors, diets, sleep routines, and other habits are making a difference, or to just know that there others out there who get it can make the difference some days between feeling all alone and feeling less alone.

These are some of the things making a difference in my world. What about you? What habits or practices make a difference for you? It isn’t easy navigating this path, but it can be worthwhile.