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When You Are Chronically Ill, Your Only Responsibility Is to Your Own Health

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Recently I had a friend call me, tearfully relaying the last year of her very tumultuous marriage. As I listened to the brokenness in my friend’s voice, I couldn’t help but think, if only I had known about this. Of course, my knowledge of the situation would have likely prompted me to reach out to others who could offer encouragement, phone her more frequently and listen more intently, but my lack of knowledge until recently will never hold me liable for being responsible for the brokenness she experienced.

As has been the case the last year and a half on my journey fighting chronic neurological Lyme disease, I have a challenging time talking for long periods of time on the phone, especially due to the need to concentrate and focus. Texting and emails have become the somewhat normal form of communication as my rheumatic hands will allow, but as for most of us, the loss of friends who do not understand the perils of illness makes communication sparse regardless. In some regards, the loss of friendships takes the responsibility of knowledge from us, even though it is the very thing we crave most: community, friendship, laughter.

I also recently attended a wedding with a large group of friends from my time in Washington, D.C. For the most part, I was grateful I fit right back in, but with countless situations, I didn’t know the individual they were talking about, the situation or for that matter, the location. Immediately fear struck me once again: Had my friends told me this beforehand and I forgot? Was I supposed to be asking more questions to follow up with their day-to-day lives? Why weren’t they reaching out and telling me these details themselves? What is my responsibility through the lens of the chronically ill?

I have always been one to follow the rules, and when rules were not provided, I was the first to draft a constitution of sorts. However, there is far from a rule book for chronic illness. There is no certain way you should act, no specific time for the duration of our treatment and, for many of us, no assurance of ever finding a cure. But as I have reiterated, these never-ending questions downloaded in our brains at diagnosis are not our responsibilities to find an answer to. Unanswerable questions will always plague us the deepest, but our limited energy cannot be spent on being responsible for people, places or things.

These many situations have brought me to ask, what have I missed by being sick? Who has brought engagement, marriage and baby celebrations into the world? Who has had to experience loss of a family member, financial endeavor or health diagnosis? On that early phone call, I did feel responsible, as if I should have known something was wrong with her marriage. But as I lay another day in my dark room, in what could be the only room I have seen in months, my only responsibility can be to myself and my health.

A common trait amongst chronic illness patients is to be people pleasers… I’ll raise my hand begrudgingly the highest for my admission of guilt on that one. Many of us want to pour out, help others, but not leave time or energy to help ourselves. But friends, if you are in treatment or not, cut yourself a break, never quit being caring, but stop looking for the prize for Best (insert dream). Illness is one of the most all-encompassing, least understood and time-warped things we may ever experience on earth. Most days, I couldn’t tell you the month or day, and far more frequently than I care to admit I mix up the year. My medications make me confused and lose my memory, so much so I forgot my grandmother’s name last week.

Us holding onto the guilt of confusion and memory problems and the pain of getting ourselves out of bed is enough responsibility to put on ourselves. We are responsible for us, even if it wasn’t the hand we wanted to be dealt.

The responsibility for the reality of time is not ours. I will stand committed to doing my best to listen, encourage and celebrate with the friends I have when the opportunity presents itself. But I’m leaving the guilt of knowing every secret a friend may tell, being able to bake the best dinner for a grieving friend and some days even remembering a friend’s birthday behind. My friends know my situation, and have never once held me responsible for the millions of things I feel I still, even bedridden, I should be responsible for. I leave this all behind because as I hold the responsibility for making my health my one and only priority now, I know I will have a whole lot more to give in remission.

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Thinkstock photo via Grandfailure.

Originally published: August 18, 2017
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