Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Being Understood
“I won’t be getting much done today or tomorrow, I might do a little laundry tomorrow but probably not much more,” I say to my husband as we talk about the plan for the week and the household needs.
“Oh, right, you have infusion today,” he replies, his words conveying his understanding of my needs in the simple way that partners do. He is not only acknowledging that I won’t be home much today, as the trip to infusion is long and quickly sucks up an entire day. He’s also telling me he knows I will be wiped out and in need of rest. His words say he understands and gives me space to have these bad days. Not that he rules me, mind you, he’d find the idea of anyone trying to be in charge of me and how I choose to spend my time and energy laughable indeed. No one knows me better than this man I chose to build my life with. As a result, no one understands my needs like he does. His understanding comes not only from the love he has for me, but also from my open and honest communication with him. He has learned what I need because I told him. He knows how I feel, because I share my feelings with him. Those are the foundations of a solid relationship. They are also the keys to being understood.
Life with chronic illness is challenging with a strong support system. Without that support it may feel impossible, at least that is the sense I get when I read the struggles of those who do not get the understanding they need from those they live with. In a way I cannot really imagine what that is like, my family is a supportive and understanding bunch, they have always been there with a helping hand whenever it is needed. It’s truly only my own stubbornness that gives me a bit of insight into what it’s like to struggle alone with your problems.
I did not start this journey open and honest. In fact, like every other dysfunction in my life, I started by hiding it, well. Even after diagnosis, when I had a name for what was happening and an understanding of where it was headed, I kept things to myself, especially the pain. The result? Absolutely no one understood what I was dealing with. No one knew I was hurting all of the time. No one knew I was afraid for my future and my mobility. No one knew I was looking down a long road of struggle that veered sharply away from the active life I imagined for myself. No one knew I worried I’d never be well enough to go back to work. No one knew I was already far down the path to RA disabling my hands. How could they? I never said a word about any of it. You see the problem with hiding your problems is, you get really good at it. I slapped on my I can fight this attitude and diligently researched all the possible fixes, and cried alone in the bathroom. I dove headfirst into changing my diet and self-care routines, and spent my nights anxiously awake worried about my future. As I tried to patch myself back together, I was quietly falling apart.
I wish I could say there was some aha moment, some turning point in which I learned to reach out, but that’s just not the case. The change came slowly. It started with the things I couldn’t hide, like a hand that refused to open, hard to hide that. In time, I learned it was okay to be vulnerable. I didn’t have to be superwoman, those who loved me would adjust, and the adjustment would be good for all of us. You see, the people who love us, want to lessen our burdens. They want to help when they can, comfort when they can’t help and most of all, they want to give and receive understanding. The key to all of that? Be honest and open about what you feel, need, and dream of. Be truthful about the things that cause you too much pain. If you do that, you may just find the support you needed was waiting for you all along, I did.
Tenacious ME 