My Cup Runneth Empty
You know that saying, "you can't pour from an empty cup"? Well, no one told me when I was diagnosed that ankylosing spondylitis would leave me with a perpetually empty one. That feeling drained would be the norm because my body is fighting itself 24/7. That I would constantly need support from others but not have the capacity to give it back.
From what I remember about pre-illness life, there’s usually a healthy give and take between friends, family, and loved ones. Favors, encouragement, and effort go both ways. When someone went out of their way for me, I was able to reciprocate that at some point for them.
But once I developed a condition that flares unpredictably, I was thrust into a position of both seismic need and prolonged suffering. Where I once felt invincible, my body's limitations became undeniable—or I denied them and paid a sizable toll. Where I once had the energy to be there for others, I simply don't have that much to give. My cup needs filling all of the time and, frankly, I can't spare a drop.
Chronic illness is punishing and depleting
The world of chronic illness is entirely unlike the normal world. It has different rules-—harder ones—-that put you at a disadvantage. Brutal symptoms beat up your body and mind. Medical bills rack up uncontrollably while income usually drops. Doctors have little to no sympathy for your plight because they see dozens of patients a day. Doubt and disbelief are slung at you from seemingly every direction as people point out that “you don’t look sick." All while you are quite literally hanging on by a thread, sometimes for years.
This feels completely suffocating and devastating-—and you don’t know what your purpose is anymore. How could you possibly have room in your brain to hear about how your friends are doing? Especially if they are doing well, celebrating positive life events, and can’t relate to any of this?
Friends and family cannot comprehend it
The deep pain and long suffering of chronic illness, losing your former life and identity, adjusting to living in a different, less functional body, managing symptoms, bills, and doctors all of the time is not fathomable until you experience it yourself. And that’s the problem. The healthy people in your life cannot relate. They have absolutely no idea how much support you need and don’t understand that this suffering doesn’t have an end point. And frankly, they are too busy in their filled-to-the-brim lives to notice that your cup is empty. Even if they did notice and offer a pour, you know that you can’t return the favor to them because you’re exhausted and spent—so you feel guilty accepting anything.
Lack of understanding means inadequate support
For many, chronic illness brings emotional suffering that's felt deep in the soul. I feel it most late at night when the world is quiet and I can be alone. And that’s when I need the comfort, affirmation, encouragement, and safe and loving arms of a friend who knows what I’ve been through, honors my fight, sees how hard I am trying every moment of every day, can look at me with the utmost compassion as the tears soak my face, and say: “I see you, I see how impossible this situation feels, and I know you feel like you have nothing left-—but I know you can carry on and make it better.”
I need someone to fill my cup without asking for anything back. I need to be loved fiercely and selflessly by tender hearts until I feel strong again. This is the kind of love that heals people. I know it’s asking for too much, no one has time to give it, and the world spins way too fast for anyone to consistently show up this way. But that doesn’t change the fact that I need it.
How much about your AS do you share with others?