Chronic Snarkopolist: Being Authentic Terrifies Me
The other day I wrote this sentence to a friend, “I am terrified of being unlovable the way I am.” THE WAY I AM means of course, chronically ill. And WHY would I be terrified of that? WHY would I have that fear you wonder?
Flipping back through my comments I get daily I can tell from YOUR experiences and my own exactly WHY I might have those fears. We have lost SO MANY of our friends and family and loved ones because we have been sick. We have lost our jobs, our identity, our self-worth, our looks, our vanity, our financial freedom, our independence, and our lovers. Which is why I am often afraid to show who I truly am in all my complexity or simplicity.
A beautiful friend of mine said to me, “I am in my sixth year of being sick and I still can’t tell who is here to stay.” That is a big deal. THAT IS A BIG FUCKING DEAL. I too have had people promise to stick it through thick and thin, sickness and health, and then seemingly on a whim, toss me. My friend said, “And I get sicker. Then more people leave. But new people come.”
It is so profound- so profound learning to navigate illness. For me I must learn to navigate my emotions, allow vulnerability, release my own bitterness against both PEOPLE and MY ILLNESS. It is difficult sometimes. And mostly- I have fear of my own illnesses and getting sicker and being abandoned by the people I love and need the most. I don’t know how other people do it. But my personal strategies are to minimize my fear and pain, spread out my friendships so I don’t lean to heavily on any one friend or set of friends, and rely on specific types of people like who I call my “emotionally healthy chronically ill friends” for support.
The problems with this are many. It means I am often minimizing my own pain and fears – I am often lying about what I really feel. And sometimes when the shit is REALLY ROUGH- my chronically ill friends are having a terrible time as well. It is hard to support each other when we are BOTH going through physically and emotionally awful times. And sometimes when I reach out to people I have depended on – they just aren’t there – they don’t want to deal with it and they don’t have to. It is easy to turn off your computer or shut down your phone without being unkind. It is nothing personal. We all understand. Yet- where do you turn when you most need support? Especially when you feel guilty for wanting support all?
Meanwhile – I once had a friend say, “Maybe you shouldn’t have so many sick friends.” And I thought about it – because I don’t LOOK sick, and can pass for healthy at first glance. But I roll sick. If I spent more than a few days without my medications I would die. I roll sick and see more specialists than most people have BEST FRIENDS. My cell phone and calendar is full of appointments and tests and follow-ups. Why lie to myself. Just because “sick” is not my ONLY identity- being chronically ill is part of my life.
The few times I have surrounded myself with primarily “healthy” people- when I have flared and been the sickest- I have found myself the MOST ABANDONED. Many people are AFRAID of illness. They don’t like sickness. Humans are inclined to find fun people to be around, not people who are ill or in pain or who need medications or in need of rest or shots or iv’s or infusions or long waits in the hospital or MANY things that some of my friends and I would not even blink at doing with or for each other. (Or doing alone anymore.)
Sometimes the abandonment does not come physically but through the withdraw of emotional support. I have heard so many people say, “My parents and family think if I WANTED to be better more and FOCUSED HARDER I would stop being sick and get off dialysis or fix my liver disease or thyroid or cancer etc.” This hurts me so much. I’m such a fan of supporting caregivers. I want so much for caregivers to have support and understanding. I have so much compassion for the difficulties and frustrations that surround them. However, spreading blame and accusation back on the chronically ill is SO inappropriate.
Blaming the sick and asking us to WANT TO BE BETTER MAGICALLY and that we have not is OUR FAULT is as absurd as saying, “If you closed your eyes and wished harder you could heal your broken leg in ONE DAY instead of the normal time it takes to heal.” Yet so many of us hear that we don’t want to be better. One doctor even told me that I didn’t want to be better enough so I was having seizures and lupus BECAUSE of my bad health. If doctors are doing it, of course some families and friends are judging and blaming too! It is so much easier to blame the sick than simply allow that unfortunate things happen and sickness happens and sometimes the only thing we CAN DO is love and support each other in the process.
I discussed my views about being loved and feeling unlovable for being ill with my physical therapist who replied to me, “I love my kids and my wife MORE when they are sick. And I sat there in silence. It was hard for me to grasp that SOME PEOPLE can love people when they are sick – without judgment, without anger. Here is a person who chose to help the injured and in pain. He chose to help people who hurt and BELIEVE they are in pain even though pain is not visible. And I realized that he meant his words. He goes to work and helps people live their best life by showing them how to move their body. But he has never made me feel minimized or unlovable or judged.
All these things are adding up for me. Life is complex and beautiful. People are inherently worth loving. Humans are not meant to have emotional distance from other humans. We are meant to engage with each other and care about each other.
All I know is that when I put distance on MY LIFE it is to keep me “safe” and really it creates an artificial distance and it is not working for me. It is hurting me. It hurts everyone. It is not real. It is not authentic. It is not vulnerable or honest to me or anyone. We all deserve better. I deserve to trust again and those around me deserve to be trusted. Even if there are a few missteps along the way.
How often has being ill kept you from exploring a new friendship or relationship? How many times have you used it as an excuse not to pursue something new? Do you use your health as a reason not to be brave? Are you afraid of love or rejection because you have been abandoned and rejected before? Can we be lovable because and not just in spite of our health? What do you think? Tell me! I must know!
I’ll be back same time next week! Kiss kiss!
Tags: chronic conditions column, chronic illness and relationships, fear of feeling unlovable, losing family because of being chronically ill, losing our identity to illness, losing ourselves in autoimmune disease, loss of friends due to chronic illness, Melissa Travis Chronic Snarkopolist writer, thyroid cancer, thyroid disease