I sat down to write this piece several times and each time it brought me to tears. Each time I tried to write about what it’s like searching for love with a chronic illness, I was struck by the raw wounds I carry from a decade of self-doubt and internal resentment. My despair grew from a basic misunderstanding of what my value as a human might be, given the body that burdens me.
When we seek love and affection, we are seeking a kindred spirit to help us navigate what is often a hostile and unforgiving social, economic, and political landscape. What we want most in a companion, someone who will support, affirm, love, and contribute to our wellbeing in a consistent and thoughtful manner. As a person with a chronic illness I had to do the very hard work of not only accepting love when it came but also recognizing that I have valuable love to give. Where I once believed that my body’s “failures” made me worthless, I now understand my illness is something that adds to my strength and helps me provide strength to others.
My personal nemesis is pancreatitis. I’ve had it no less that 30 times over the last 3 years. It is a very painful disease. It feels like an elephant kicked me in the chest, then someone poured gasoline down my throat and then set my ribs on fire. I do the same thing every time I feel an attack coming on—I head to the hospital, they give me pain meds, then they hook me up to IV fluid. Then my pancreas has to rest which usually means not eating anything for several days until the organ is no longer swelling and causing me pain.
In these moments, when it is just me and my beeping IV and an empty hospital room, I excel at the art of self-depreciation. I am a marathon self-hater and I can list every single part of myself that is totally and completely unworthy of love (complete with footnotes). In those terrifying empty moments of solitude, when my body is weakest and steeped in uncertainty, the thoughts of fear and skepticism are not only strongest but also (strangely) the most logical. It naturally follows that if I can’t even keep myself hydrated and health, how on Earth can I be someone’s wife, mother, partner, ect. I do not deserve those things because I would just be a burden to someone else. It is safer to be alone, by myself, where my only companion is the peace I’ve made with my misery.
But then I started making a genuine effort to look for a partner and I happened to find one. She learned very quickly that dating someone with a chronic illness would involve dealing with their sickness related anxiety depression, sadness and occasional distancing. The important thing to remember is that YOU did not cause these feelings but often you can help with them. We live in a world where we are constantly told “mind over matter” and you just need to eat organic, get some sunlight, and exercise to be healthy.
The truth is that’s a lie.
Some of us are more intimate with the randomness of illness and pain and that relationship takes a toll. We are often scared and feel isolated from our able bodied and healthy counterparts. Sometimes what we need is just one human on this planet full of humans who will just BE with us, being with us simply involves sitting next to us while we take a nap.
Supporting someone with a chronic illness is HARD. Ways to support a partner that has a chronic illness:
- Research their illness
- Go with them to doctors’ visits if you are able and if they are comfortable with that
- Become familiar with their medicine regiment if you can, and ask about side effects so you can recognize them when they occur and discuss them together
If you are the one with the chronic illness, Self-Care is crucial, not just engaging your needs to one another. There will be times when your partner can not meet certain needs because they are physically unable to or because they know the toll it will take on their health and their lives depend on them drawing these boundaries. Have a conversation with your partner and communicate these limitations, so both parties can adjust their expectations and actions. It will seem like a lot at times, and it most likely is not what you envisioned for yourself when you imaged your happily ever after, but expectations change mostly because love changes us, and adversity can make us better, more compassionate people.