Two young woman talking at lunch.

To Those Who Stand With Me as I Fight Against My Rare Disease


My chronic, rare disease is with me every day. There is not one day that I get to take a break and forget of its existence. It takes intense focus and stamina to fight an everyday battle, to manage the unmanageable and stay one step ahead of the unpredictable. Health always has to be the number one priority, with everything else falling in line behind it because without my health, I have nothing. It can be exhausting and extremely scary.

I understand that for all of us, rare illness or not, the future is unknown. But for those of us living with a rare illness, the stability of that future is also unknown. I don’t know exactly what things like having children or old age looks like for me. I don’t know what the future regarding my medication or potential new therapies will be. There are limited resources, if any, to get the answer to these questions. I often question, “Is it even possible?” I was raised to believe that I could do anything I set my mind to and I truly believe that. I use that mindset to motivate myself every day to keep going despite the challenges. But living with a rare disease is a whole other matter not one only of the mind, but one of the body. It is hard to not let my mind wander to the idea that one day my luck and  my relatively good health will run out, and my body, which is missing key elements to survive, will give up on me. Everything is a big question I try not be concerned about – but naturally, I worry. It keeps me up every night and impacts every decision I make.

Most days, I fight rare disease with no hesitation or sense of self-pity. But some days, it is just too much to even process: the pain becomes unbearable or my emotions of feeling useless take over. Sometimes both. Those days are the worst. Those days, having a rare disease overwhelms me and the anger comes pouring out, and sometimes to my own embarrassment, gets directed at you, the person standing by me.

For this, I will never be able to apologize enough. Please know that I am never angry at you. I am angry at the situation and often, my inability to keep it all together. I am a perfectionist with a rare disease and that is not always a graceful combination. I always think that I should be able to handle everything seamlessly and when I can’t, it feels like a personal failure. None of this is to excuse my action, but to explain to you that I am aware of this flaw I have and reassure you that I work every day to not let having a rare disease turn me into a bitter person. Those of you who know me know that I am not easily angered person, but sometimes, as with all of us, we have our moments.

I recognize that you are not just standing by me, but with me. You are fighting with me and know that I could not fight this fight without you. You are the reason I fight it with such vigor every day. Whether you are one of my fellow rare disease fighter or my unaffected friends and family, you are my strength.

Thank you for understanding when I cannot be there, even if it is a special moment for you. It breaks my heart not to be there with you but I am always there in spirit.

Thank you for adjusting the plans to accommodate me, whether it is where we go or how long we stay. I am so amazed to have someone in my life that helps me feel included.

Thank you for staying with me while I am sick and in pain, even if you cannot do anything to make it go away. It is OK if you cannot think of anything to say. It is hard enough to be in pain, especially to have to go through it alone. Just you being there means the world to me.

Thank you for reminding me that tomorrow is a new day and that yesterday’s pain will fade.

Thank you for making me laugh and smile, when all I feel like doing is crying. Your words of reassurance and positive spirit are priceless.

Thank you for never making me feel like the burden that my illness tries to convince me I am. I struggle every day to keep my confidence up. I often overcompensate, trying to prove to myself that I am independent, that I do not need anybody – but we all know that is not true. You remind me that we all need help sometimes.

Thank you for not treating me like a patient, but like a person. The truth is, I do need you. Not in the sense that I need you to take care of me, but just to remind me why I work so hard to take care of myself and for the emotional support.

And most importantly, thank you for staying. Despite the endless hospitalizations and medical treatments, the burst of anger and moods swings, the overanalyzing or incessant planning, you chose to stay when a lot of people left. I cannot promise that the it will always be easy to live a life with me, but what I can say is that I recognize your support. I will always try to ensure our moments of happiness, laughter and joy outweigh the negativity. I promise  I will always fight anything that tries to tear us down. And please, always know that you are the primary reason my fight against my rare disease has been a successful one.

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