To Friends Who've Grown Closer -- or More Distant -- Since My Diagnosis

There have been many times in my journey with endometriosis when I have felt like a black box has been placed around my daily life. If I “overshare” by being honest and saying that I am dealing with severe pain, certain people who used to be my go-to confidantes disappear from my inboxes and social media feeds. I begin to compulsively track who has seen my posts or when the last time so-and-so spoke to me. This is not how I want to spend my energy, but that vortex of non-engagement from people I care about always sucks me into its spiral.

If I could tell all of these distant people one thing, it would be: please acknowledge the work I do to manage my pain, not just the work I do to eliminate it. No amount of dieting, exercise, therapy, prayer, or meditation is going to eradicate all of the symptoms of my chronic illness. Yet, I spend so many hours of my day – every day – incorporating these kinds of tools to mitigate my symptoms.

Many people have said that managing a chronic illness is like having a full-time job on top of everything else that we do in our lives. From work to study to parenting to volunteering to hobbies, we fill our days with numerous goals and labors of love just like our able-bodied friends, but we also top that labor off with hours and days of work to manage our bodies.

This management can take many forms and many motivations. Our labor is to soothe symptoms, stave off degeneration, combat depression, calm anxiety, avoid burdening our loved ones (and even our not-so-loved acquaintances), enable achieving our goals and so much more. We medicate, rest, exercise, stretch, soak, heat, ice, infuse, feed, restrict, ground, distract, mobilize, immobilize, disclose, suppress. The list can fill innumerable pages of our health journals (and yes, updating those is a job, too). All of these tasks are vital to our well-being and our ability to coexist with our communities, families and coworkers.

For some reason, though, it seems this never-ending and ever-growing full-time job – one for which I am woefully overworked and underpaid – doesn’t merit much interest from able-bodied people around me. Despite being a core component of my everyday life, symptom management is usually only acknowledged by my closest friends. The able-bodied networks of chronically ill people tend to be keenly interested in “major developments” around someone’s condition: namely – surgery, medical interventions, and chances to ask if X, Y, or Z treatment has provided a cure for my incurable illness.

I have seen on both my own social media and that of my fellow spoonies that a hospital trip update or any kind of needle-in-your-arm photo elicits a surge of engagement, especially from followers we know in “real life.” Similarly, a paragraphs-long text post about a new therapy or treatment to which we are attaching a great deal of hope (an emotion that too often seems to be translated to “potential cure”) will cause people who we haven’t spoken to in months to pop out of the woodwork like uber-healthy groundhogs to share best wishes, “fingers crossed!” and a slew of sappy emojis.

Where was all of this peppy social interaction when I was laid out in bed for four days under my heating pad trying to find someone to talk to me about my 27th rewatch of “Gilmore Girls” before I succumbed to total boredom and isolation? I know these people love talking about Stars Hollow, too.

A generous diagnosis of this phenomenon could go one of two ways. Sometimes I think people simply forget about us. They don’t remember to check in and they only remember us when social media reminds them in just the right way. Everyone is caught up in the highs and lows of their own lives. Another reason could be fear – fear of comprehending incurable illness, of not knowing the right thing to say, of the chance that we’ll say something too scary that will stick in their minds and keep them up at night. Nonetheless, neither of these reasons are excuses.

My management of pain and symptoms is, for now, a permanent part of my daily experience. Just like your toddler rearing or your all-day Zoom meetings or any other somewhat mundane yet still worth talking about part of your healthy life, my chronic illness is a part of who I am and how I experience the world. I can’t truly answer your question of how my week has been without mentioning the acupuncture appointment that disrupted my workflow but energized me enough to cook a tagine for dinner for the first time. Writing my assignments while soaking my sore pelvis in the bathtub is just as much of a story as your story of submitting your deliverables from your home office while the Wi-Fi kept cutting out. Managing an illness does not devalue anyone’s life.

The message being ignored gives to chronically ill people is that you do not see value in a life lived with sickness. If you avoid engaging with us when we share our daily experiences or only become invested when we try to “fix” ourselves, it tells us that you are not OK with who we are or how we are. We are not complete people in your eyes if we are simply persisting with our illnesses (but believe me, there is nothing simple about persisting).

The friends who break this pattern mean all the world to me. They are not always the people I thought I’d end up being closest to, but steadily and lovingly they move closer and closer to my inner circle until one day I look over my shoulder and see a new chain of people holding me up when I cannot stand alone. These will be the people who talk to me late into the night when I am in so much pain that I can barely focus on the screen. They will be the ones I call with good news. They will be there for my own ups and downs, whether my illness plays a role in those or not.

I am learning to accept and honor these changes, and I still mourn the losses of the people who find my pain insurmountable. The wounds from lost friendships take a long time to heal and those of us with chronic illnesses are trying to heal every day already. All that we ask is for you to sit with us in that healing space. Pass our pills to us, comment on our posts, and please don’t ask us if we’re still sick.