An Open Letter to My Caregivers

Dear Caregivers,

You are the glue that holds my life together, intricately filling in the cracks of emptiness. Your role in my life requires an alert sense of awareness, and I see myself in the reflection of your eyes, as you make my comfort your priority. This runs an endless river of warmth and joy through my heart. It’s far from easy to know that I was once capable of doing everything on my own. I know it’s far from easy to watch me deteriorate. But what do we gain from the easy things in life?

Scleroderma has become a part of our lives without asking. It reared its ugly head into our thoughts, while simultaneously teaching us to let go of our comfort zone. Long nights are spent awake wondering what lies next; silent tears cried into our pillows. As patient and caregiver we are champions, because we have to readjust our actions to a new life. We become more sensitive, aware, and nurturing — even if these things were uncharacteristic before. We gain the knowledge and vocabulary of a doctor as we navigate the bizarre symptoms and side effects thrown our way. The disease is our sculptor molding us to fit the form of whatever lies ahead, whether good or bad.

The amount of appreciation I have for you cannot be put into words. You are always one step ahead of me, and extremely patient with my requests. You have grown to understand me and my journey so well that we are connected at the heart. You treat me as a human, not a chore. When I’m having a pain-free day, we are equally relieved and grateful. When I make an extra effort to do something extraordinary, you are rooting me on with love and support. (Even if it’s just me slicing a tomato). When I hurt physically, you hurt emotionally. I admire you because the horrible pain I feel can be seen, while you keep your emotional pain hidden to be strong for me.

It is hard for me to not feel like a burden at times, but you never make me feel this way. It is my own insecurities eating away at my logical mind. I’m 29, dealt the life and body of someone  in their 70’s. I was healthy, young, independent and vibrant before sickness robbed me at 22. Sometimes I struggle behind closed doors to do things on my own, longing for the sweet taste of freedom to return, just for a second. My bubble of personal space is burst as you help me put my pants on, or wash my back in the shower.

Sometimes, I wonder what you’re thinking. Do you pity me? Does my disability empower me? Or does it make me look weak? The perception I have of myself is very different from the perception others have of me. Sometimes I need to be reminded that it will be OK, because I don’t always feel that way — even though my facade may say otherwise.

Hug me. Pray for me. Pray with me. Encourage me. We have to actively address my disease so we can fight it together. Talking about my symptoms, accompanying me to the doctor, helping me thrive — this is how we are going to tackle this monster. I can never have too much help, so please offer even if I don’t ask. I’ll never get annoyed from an overabundance of help.

Thank you for putting up with my mood swings. Sometimes I’m so miserable, I lose my patience and take it out on you. I am truly sorry for that. I’m still trying to mentally adjust to being severely disabled. Some days I am barely hanging on by a thread, and your dedication and perseverance is what helps. You always believe in me and continuously provide sunshine on the darkest of days. My gratitude for you exceeds the boundaries of the universe.

Without you, there is no me.

Love,

A Chronically Ill Patient

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to scleroderma.