Making Meaning Out of Life With Chronic Illness

I’m not happy to be sick, but I’m thankful for the opportunity to live a meaningful life. Much of the time, living a meaningful life involves “making meaning” amidst tough circumstances or mundane rest days. My chronic illness, mitochondrial disease, leaves me with very little physical energy after completing even the bare minimum of health management activities. So, the temptation to react with exasperation when someone asks what I… do or what I’m thankful for is pretty strong. Can you say “eye roll”? Silly as it may seem, that’s the crucial moment. That’s when I can choose to make some meaning from it all instead of descending into bitterness. I’m (very) imperfect and may not have the best batting average, but there’s dignity in the attempt.

“Making meaning” sounds vague at first, or at least, it did to me. A good friend of mine introduced me to the term several years ago, giving voice to the idea that bounced around my head. Religion isn’t a big part of my life right now, and I don’t ascribe to the concept that there’s inherent meaning in suffering. Although other people – many of whom I respect – believe in that idea, it doesn’t ring true for me. I think a human life is made up of choices, numerous of them bigger than they first appear. Thank goodness there’s no arbitrary limit on how many mistakes we get to make, either!

Grumpy afternoons and teachable moments are both repetitive steps of the process. I’m not talking about a foolproof way to find your zen, spot every silver lining and poop rainbows here. Nope, living with chronic illnesses and rare diseases is frustrating and painful. This life takes grit, and softness. It requires adaptations, and safe boundaries. At times, I feel like I’m putting together a puzzle with misshapen pieces. If I’m going to be totally honest with you, I used to feel like the misshapen piece. Sometimes I hear echoes of that feeling, but quieter than before. Rather than listen to those echoes above everything joyful and loving, I acknowledge them and let them keep floating on by.

In order to effectively make meaning, I prioritize which thoughts and feelings deserve my full attention. Does it serve me or others? If not, let it pass. It’s not something I expect to constantly control, and I try to be kind to myself about the countless days when life and frustrated thoughts just happen. Grief is tricky, and that’s one case when I’ll let the hard feelings sit so that I can process them. Shame is a no-go, full stop; it’s toxic. Envy doesn’t serve me, and it hinders personal connections. Joy is infectious, in the best way. Everyone has a different balance, of sorts, and it takes time – perhaps years – to find a version of it. Being truthful about how I feel concerning my health situation enables me to be open. When I face the remarkably uncomfortable aspects of living with a progressive illness as a young adult, I also come upon the beautiful parts of myself that have been forged in the roaring fire. For me, at least half of making meaning is being open to the possibility. Simple as it may sound, that’s the work.

The bits of meaning I make don’t have to be categorized as good or bad, I can simply say that life is… what it is, today. Although many of us like the same motivational quotes on social media, we don’t have to make the same meaning of a difficult situation. One of us doesn’t have to be right while the other is wrong, we can just be. A tough scenario can illuminate a person’s deep strength, while another person lives a similar day and finally recognizes the value of their still-soft heart. We can share meaningful moments and widen our horizons together, without the need to trump each others’ insights. Maybe the meaning of a tremendously challenging day is that I’m still showing up with a voice, and you’re still here listening. Maybe the meaning is subtle, and that’s OK. The most beautiful part of making meaning is that at the end of the day, we end up with a vibrant patchwork quilt of meanings.