Something’s not quite right, but it’s also not obviously wrong. No broken bones, no fever, no rash, no cough or sore throat. It’s nondescript – fatigue, headaches, loss of appetite, overall sense of malaise. You go to the doctor and they run some blood work, listen to your symptoms and tell you everything looks good! Nothing to worry about. Try a Mediterranean diet and exercise.
What does that mean? Is it all in my head? Am I making this all up? Is this supposed to be normal?
Finding a doctor who will listen, take your symptoms seriously, properly diagnose you and help you manage symptoms is the first step and it’s no small feat. But now what? You got the diagnosis – maybe it’s chronic fatigue syndrome, chronic migraines, fibromyalgia, lupus, rheumatoid arthritis, ulcerative colitis, the list goes on (seemingly forever). For me, it was postural orthostatic tachychardia syndrome (POTS) – a condition that looks a little different for everyone and causes an array of symptoms including dizziness, fatigue, and heart palpitations - and mold toxicity from an ongoing, inadvertent toxic mold exposure. Two conditions I had never heard of and that changed my life completely. As it turns out, I happen to be 1 of the 1-3 million people affected by POTS and part of 25% of the population with a genetic predisposition that makes them more susceptible to illness from mold.
Life changes when you’re diagnosed with a chronic illness. Suddenly, you don’t have the capacity and bandwidth to do all the things you used to be able to and not think twice about. Sometimes just getting out of bed, feeding yourself and taking a shower is all you have energy for. How do you even begin to process the impact this experience has on your mental and emotional wellbeing?
Along my journey as a therapist and as someone with a lot of personal experience in this area, here is what I’ve learned so far.
1) Give yourself permission to grieve – chronic illness is a huge loss. A loss of the life you thought you would always have. A life where you could go and do anything you wanted. A life without pain and limitations. That is profoundly sad. Let yourself be sad. Cry on the phone to a close friend, express your thoughts and feelings through writing, join a support group, go to therapy. Your sadness is valid and important and deserves to be seen and understood. The funny thing about emotions is that the more space we give them to be there, the less overwhelming they are to be with.
2) Honor what your body is telling you. Your limitations are your limitations and pushing yourself beyond what your body is telling you it can do creates more problems than it solves. This is a hard one because we live in a society that values productivity. It requires us to regularly check in with ourselves and pay attention to the subtle signs that we’re approaching our limit and need tending to. Then, it requires us to honor those limits and tend to our needs. The Spoon Theory by Christine Miserandino (check out her blog – butyoudontlooksick.com) is a good metaphor for living with chronic illness. If spoons represent the amount of energy it takes to complete all your tasks and activities for the day, folks with chronic illness have a limited number of spoons. It’s critical to know how many spoons it takes to do various tasks and how many spoons you’re working with on any given day. Waking up, taking a shower, making breakfast, getting dressed, taking the dogs for a walk, going to work, making dinner, cleaning the dishes, talking on the phone, spending time with loved ones. These all take up our precious spoons and we have to prioritize and plan accordingly.
3) Find joy in the small things. Listening and honoring your limitations means you can’t always participate in grand, epic adventures and you may have to practice the art of saying “no,” even when you don’t want to. In these moments, the small things become the big things. Sitting on a porch swing in the summer, feeling the warm sun on your skin, watching a sunset, enjoying your favorite food or dessert, listening to good music or podcasts. The list is long and you get to be creative. Honoring your limitations doesn’t mean no joy, it just means shifting how and where you experience joy in your life.
4) Be kind to yourself. Notice your inner dialogue. What are you saying to yourself? Would you talk to a friend or loved one that way? It’s so easy to offer others compassion when they’re going through a tough time. We deserve to treat ourselves with the same compassion too. Some days are going to be harder than others. Some days we can accomplish more than others. And that’s okay. Doing what you can is “good enough.” The real work is not in accomplishing the tasks but the process of doing the tasks with kindness and compassion towards ourselves.
Living with a chronic illness is an ever-evolving journey of pain and growth. I’m still learning as I go how to cope with all the curveballs life likes to throw. My hope is that speaking about my experience and thoughts on the matter may resonate with you in some way and help you feel a little less alone on your journey.