To the Young Person Wondering How the Heck to Live Meaningfully With Illness


If I could send a message back into the past to my younger and healthier self, the advice I would have given may be unexpected.

To my younger self, I would say that the trials and tribulations ahead would not be titled, “Coming to Terms With Illness,” or, “How to Live With Illness,” as I would have expected.

It would be, “Coming to Terms With Life as an Ill Person, and How to Be Ill on Your Own Terms.” And despite my long struggles with health issues, this has only been elucidated to me recently.

As a young person, I can attest that living with a chronic and progressively debilitating illness of the central nervous system is not merely my doctors appointments, my pain, my medications, my tremors, or any symptoms a person may recognize. Being young and forming my concepts of identity and place in the world, I have been able to observe how, in fact, it is the “life” that I fit around my illness that I must come to terms with.

Education, socializing, future planning, all of these things become suspended. In the recent months, I’ve been noticing more and more my disengagement with school and have chalked it up to the cognitive impairments I experience – which in my head have become synonymous with being “just another one of my flaws.” But, my condition’s restrictions and impacts on me are not my flaws; they are the lines I must maneuver amongst and push tentatively, trying different types of pressure. I must find new ways and new things that give my life the meaning and joy I had once prematurely assumed I would find within the life I expected. And, ultimately, I must come to terms with the life I have.

So, to any young person wondering how the heck to live meaningfully with illness, or any person whose young loved one is struggling to find a balance between living up to “expectations” and taking care of themselves… I’ll let you in on the following.

Coming to terms with the illness is easy: the terms are laid down symptom by symptom. Coming to terms with the life, however, requires creativity, endurance, innovation, and bravery – traits which I see in every single young person struggling with chronic and debilitating conditions, every day of their lives.

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