I Have a Chronic Illness, and I Don't Think I Need Hope
Hope is such a short, but complex word.
When I think of hope, I think of fear. The two go hand in hand. We really only need hope if we’re scared and unhappy with the way things are. We hope for better health, more money, better relationships, a better job, etc. When we need hope it’s because we aren’t content in our current life situation. But really, what we need to work on is living in the moment and being satisfied with how things are. We are taught to think about the future and plan things. We need to start living day to day and moment to moment.
People in my life have told me that I need more hope to get through this illness. But I don’t really understand hope. It’s not something I feel I need. I don’t want to be sick, but I try to live day to day. I try to find the good moments in everyday, because no matter what’s going on in your life, there is always something good. Even the smallest of things, you just have to learn to notice them. I have had to learn to be content with where I’m at. Believe me, I haven’t always been like this. I used to struggle a lot with my life changing so drastically when I became severely sick. I have learned to let go and live despite what I’ve been handed. I still struggle with this sometimes, don’t get me wrong. It’s a work in progress, being 100 percent content in your life.
If I were to have hope, it would be because I’m scared of never getting better. I’m not though. I believe we’re all on our own paths, and we are given struggles so that we can grow. I don’t know why I have been given the things I have, but I know there is a reason. I’m actually grateful for the struggles, because I know that I wouldn’t be the same person today. I wouldn’t have learned the many lessons I have, and the many more I will learn in the future.
A man I met recently told me this quote, “Pain is inevitable, but suffering is optional.” It’s very true. Everyone is going to experience pain in their life, but we get to choose how we handle the situation. We get to choose if we are going to suffer, or if we are going to live despite the circumstance. I feel like hope plays into that too. If we choose to suffer, we need hope for a better future. But if we choose to live and be in the moment, we don’t need hope. We don’t need hope because we are not scared. We are at peace with the position we are put in. Now this is hard, it’s something you have to work at. Being at ease when you’re given something not so pleasant to deal with is tough, but it’s possible.
So now that you’ve read this short summary of what I think of the word hope, what does it mean to you? When you really think of the word hope, what comes to mind? I offer you the challenge of really sitting and thinking about hope, and why you feel you need it.
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Hi, my name is Kali! I love reading, watching tv shows, researching things I’m interested in, and cuddling with my therapy cat Naya. My dream is to go to film school and then work as an actress and tv writer. I love storytelling and it’s been a great way for me to distract myself when I’ve been really sick. I love to travel. My favourite city is London. I would love to live there someday. I have been lucky that I’ve been able to travel some despite my health and all I have to do medically. It’s definitely more difficult to travel, but I’ve always had the mindset that I’ll figure it out and I have. I may have to do things others don’t, but that doesn’t stop me from trying to do the things I love. I have been apart of the chronic illness community for many years. I was born three months premature in Vietnam. I was adopted by my parents and have lived in the USA my whole life. I have Ehlers Danlos Syndrome and have multiple comorbidity conditions, such as GI motility disorders, GERD, POTS, inappropriate sinus tachycardia, MCAS, peripheral Neuropathy, neurological issues (seizures, on and off paralysis etc.), chronic fatigue/Epstein Barr, hypoglycaemia, urinary retention etc. I have also had Chronic Lyme and other tick borne illnesses. I started having symptoms as a very young kid. I first just had joint issues and would hurt myself easily. Then when I was in third grade I got bit by a tick and developed other symptoms. That’s when I started getting more sick. I was mostly functional until I was in 9th grade. I started missing a lot of school and had to drop out in 10th. I have been mostly homebound since then (about 7 years). I am in a power wheelchair, hooked up to my TPN or other infusions 24/7, have a gj feeding tube, I use urinary catheters and spend most of my days and nights doing medical treatment, going to appointments, and calling people. I like to raise awareness and connect with others going through similar things. Being chronically ill can be very isolating, but we are not alone. I have learned many things throughout my medical journey and I wouldn’t change any of it. I try to stay positive, optimistic and continue to think about the future and have dreams on all I want to do. I’ve learned life is precious and I try to live without regrets. One of my favourite quotes is, “every day may not be good, but there’s something good in every day.”
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