Humans of ME/CFS

It’s hard living with an invisible illness that not many people understand (let alone believe), has no known cause or cure, and no effective treatments. Before CFS, I had giant goals: get my PhD, have a baby, gain tenure at my university, make a name for myself in my field, etc. I completed my PhD and gave birth to my sweet little girl just before getting really sick, but I’ve had to adjust everything else.

This disease has robbed me of lots of things like a clean house, an active social life, advancement in my career, hobbies and much more. But I’ve learned to re-prioritize, and I’ve come to a place of deep appreciation for the things I can still do. I teach at a university, but I’m no longer seeking tenure. That means I make a little less money but I have a lot of flexibility in my schedule and overall much less stress. Many of my classes are online, so it’s very manageable with this disease.

And I truly love my job. And I have my beautiful daughter and a sweet wonderful man who is very understanding and never makes me feel guilty about not doing enough around the house. And pets! The three of us are animal lovers and spend lots of time living our sweet pets. Yes I have challenges, daily pain, heavy fatigue and a whole host of other symptoms that have forced me to slow down to a snail’s pace, but I have a life full of love. And I am grateful. And I am happy.

When things get really hard, I remind myself to “look for the love.” Because it’s everywhere. I can always find it in my child’s eyes, in a warm hug, in a cat’s purr, and in my Facebook support groups. I can find it at my daughter’s school when I see children hugging their parents goodbye each morning. I can find it on TV when I watch an inspiring documentary or good indie film. It’s in music and art. There it is again when my neighbor waves to me and offers a kind smile. Love is simple, it’s everywhere, and embracing it is a powerful defense against the darkness of this debilitating disease.

For many years, I was depressed. Severely depressed. Depression is a dark and scary place to which I never want to return. With the right antidepressants, the use of medicinal marijuana and finding a good therapist, I was able to pull through. It’s strange how life works. I hate this disease, I hate my chronic migraines, and I hate depression. And yet it’s 100% because of this journey that I have so much gratitude and love and joy in my heart. I’ve boiled down my priorities to only what is absolutely most important. And that’s how I always want to live life, with or without chronic illness.