Hold Space

One of the hardest things about chronic illness is how it has irrevocably and undeniably affected my relationships. It’s hard to bear witness to how the people in my life respond to my diagnosis. There is no flawless response, no unbreakable show of strength and support. Just as my response is layered and messy, so has theirs been. 

I was asked to confront, accept, and acknowledge my “new normal” in a way that no one else in my life must. But that doesn’t mean that they don’t: I must live with my condition, but so, too, must the people closest to me. 

Revisiting grief

Two and a half years into my diagnosis and it’s only recently that I recognized how the grief cycle of diagnosis does not just apply to me. My loved ones grieve too. And if I’m honest, that’s not just painful—it makes me angry. 

But let’s talk about the painful first. 

Despite their medical training, my parents are still parents, and I can see the worry, fear, and sadness in their eyes as they watch me navigate these new waters. They don’t know what to do for me, what piece of advice will magically grant me more peace of mind. 

I’ve watched my brother fumble with his words and try not to bring up my condition because, at the end of the day, he doesn’t know the “right” ones to say. I know watching his older sister struggle is something he doesn’t know how to make sense of. 

I’ve heard my closest friends talk to me with so much concern, unsure of how to best support me, and where to strike that balance between encouragement and support, and giving me the space I need for self-care. 

And if chronic illness changed my life overnight, the same can be said for my husband. He sees and spends the most time with me, so my pain has become tightly stitched to his life. And his pain is palpable to me: I know he wants nothing more than to fix this, and yet, that’s not possible. 

It is hard to ignore the helplessness I can see and hear from all my loved ones, but it’s equally hard to see and hear it from my health practitioners, those guardians of my healing. There is grief in my diagnosis for them too: here is a patient who suffers and for whom not enough can be done. 

Here comes the anger

It is painful to hold space for the psychological pain of the people in my life, which is what makes me angry. I’m angry that they are affected by my diagnosis. 

But I’m also angry for the thing that perhaps I should not say: I’m angry that I, the diagnosed, must hold space for their pain. Is mine not enough? There are times when I feel like yelling, “If you feel that way, imagine how I must feel!"

This is the ugly face of chronic illness. When I talk about the things I could never have predicted about this life, a big item on that list would be resenting how my condition affects others. It is one thing for me to feel impatient and frustrated at the insensitive responses I have received, but it is another thing entirely to be impatient with the emotions felt by loved ones. 

Chronic illness has made me selfish in that way. 

The selfish life?

Trigeminal neuralgia may make me feel selfish, but I know that this flavor of selfishness isn’t because I want the world to revolve around me—it’s because I need to figure out how to move with the world around me. But this kind of self-centeredness has the same side effect as any other kind: it has the potential to isolate and alienate. The inclination, then, is to secret away how I really feel, which may be easy in the short run, but which does heighten my loneliness in the long run. 

In an unrelated conversation several months ago, my father said to me that dealing with the complications that can arise in loving relationships is better than not having those relationships at all. I’ve thought a lot about those words, especially when I feel the gathering impatience and resentment during an overt display of emotion over my condition. And what I’ve realized is that my father is right: those complications are worth it. 

Because those relationships have pain-alleviating powers than can rival the medications I’m forced to take every day. 

Renegotiate the terms

When I bear witness to the pain of my family or friends, I realize that as hard as their grief is for my pain, it is borne out of love for me and that is nothing to resent. That is something to honor and feel grateful for. 

But their grief should not eclipse my own and become a burden. I don’t mean that to say that their feelings are a burden; I mean that their feelings should not become a burden I carry as guilt and shame over what “my” condition has done to them. 

In order to free myself of that psychological minefield, I’ve learned that it’s my responsibility to lead by example and let others know if and how much I am willing to talk about my condition. 

This is about you

In all relationships, there will be multiple times throughout life when you have to renegotiate the terms of engagement. You have to show others how you want to be treated—and in the case of living with chronic illness, you have to show others how you want them to interact with your condition. 

This empowers you to share what you want when you want with the right people. You will not feel comfortable trusting your feelings with every single loved one in your life. It is perfectly okay to safeguard your health and wellness by choosing not to be 100% open unless you feel safe and ready to do so.

You are not selfish or ungrateful if you feel pain, anger, or resentment over how you and your condition is viewed by the people in your life. However, you are human and any complicated feelings you may have that are tied to your relationships is actually part of your grieving process.

My hope is that you will learn to hold space for your own grief, and in doing so, find a deeper well of compassion for anyone close to you who grieves as well. 

You can hold space for their pain without minimizing or negating your own.