Shortly after we were married, my husband had an anaphylactic reaction to a bee sting. He was prescribed an epi-pen and began immunotherapy. A year later he was stung again, his epi-pens failed, and within a few minutes he was not breathing and non-responsive. Thankfully, my amazing neighbors and paramedics responded quickly and saved his life. Sitting by his bed in the ICU in the following days, I had a lot of time to think about our life together, where we had been, and where I wanted us to go with this gift of more time. I don’t think it fully registered at the time, but in retrospect, I know that is when I decided I wanted children. Fear and all, I knew I didn’t want to miss out on any of the greatness life had to offer, and I no longer felt like anything important could wait for “later.”
Not long after that, Ryan had an odd reaction to one of his immunotherapy shots which caused his allergist to discover that he has a rare disease called systemic mastocytosis; which is just a fancy way of saying he is prone to extreme allergic reactions and a laundry list of other miserable symptoms that began rearing their ugliness throughout this period – flushing, brain fog, and asthma to name just a few. Mastocytosis has a long list of possible triggers, and much like Lyme’s disease, an even longer list of potential symptoms. Luckily, he has what we now refer to as a “light case of the masto” where his main triggers are bee stings, heat, and stress. While bee stings are the only thing to cause anaphylaxis for him, heat or stress can cause him to feel awful for days. Needless to say, our life has changed a lot in response to what is now our not-so-new normal.
For my wilderness explorer husband and for me, these changes have been hard and sometimes traumatic. Still, I’ve been thinking a lot lately about the gifts chronic illness has brought to me and my family (like growing our family!). While I don’t have any choice about his diagnosis, I do have choices about how I respond. And, as always, I choose love.
So, I dedicate this list to my sweet Ryan, our children, and to everyone who lives with or loves someone with chronic illness.
5 Gifts of Loving Someone with a Chronic Illness:
1. Living life fully
When you or someone you love has a chronic illness, it makes you appreciate life in a whole new way. Our priorities have shifted and the sense of urgency we feel to live life fully is palpable. We value time together, experiences, and wellness above all else. We have been rendered incapable of living life in auto-pilot, working too much, or staying mad. As much as we both still have an ingrained desire to feel accomplished at work and contribute to our community, we guard our time fiercely and prioritize our family above all else. We don’t wait to do the things that matter most to us in life. Our bucket list is front and center now and every day.
2. Getting really good at boundaries and saying no
We have gotten really good at saying no and setting boundaries even when it’s hard. It’s not unusual for us to have to back out of a commitment at the last minute. When that happens, we know it’s right even if it is upsetting. We have learned that boundaries aren’t always stable. What was okay yesterday may not be today, and so we shift and set again. Each time, reassuring ourselves and each other, that our well-being comes first and the demands of the world can wait.
3. Slowing down and appreciating little things
We have always lived well, adventured often, and devoured life, but now, we have a much deeper appreciation for even the smallest of wonders; time with friends, family snuggle piles, meals at home. We have learned the importance of slowing down and resting between outbursts of energy even when we really want to keep going. Where once we thought it best to push ourselves, we now know that sometimes, you can get more done when you pause, refill, and start again renewed.
4. Learning to be understanding even when I don’t understand
It is not unusual for Ryan to feel terrible and not be able to articulate exactly how he feels or what he needs. Over the years, and yes, still sometimes, I have responded in frustration. “What do you mean you don’t know?!” “Just tell me what you need and I will do it.” If only it were that easy. If he knew, he would tell me. My anger only makes it worse for both us. The reality is, he feels like shit sometimes, it really doesn’t matter why, and often there is nothing to do but ride it out. Sucky but true. I’ve learned to be understanding in the face of the un-understandable. I now consider this one of my super-powers.
5. Learning to take better care of myself
The most profound gift I have received is learning to take better care of myself. The golden rule of triage, “apply your own mask first,” continues to be the best gift and hardest lesson of all. It can be too easy for me to disappear into the needs of my family to my own detriment. While that may sound noble, it definitely is not. If I don’t care for myself first, I get depleted quickly and am no use to anyone. This truth is universal regardless of the health status of yourself or loved ones. I’ve had to learn that sometimes I need to get away, put my needs first, or ask for help. These are all such good things.
I love my life, my husband, and all the gifts we have been given; even, and perhaps, especially, the ones that have come wrapped in the cloak called mastocytosis. I’ve reassured Ryan more than once that his immediate reaction to stress is a gift – he can’t ignore it and has to make changes or suffer the consequences right away. The rest of us persevere and are surprised with heart disease and other ailments later in life when it’s too late to do anything about it.
I am grateful for the perspective we have, the intensity of our relationship, and the gifts we receive in every moment.
We are so lucky.