A Balance of Hope

Did you ever write a letter to Santa asking for a puppy or maybe for the new xbox360? And maybe Santa brought you a stuffed animal puppy or FurReal friend instead? Not what we meant, Santa. And maybe instead of the new Xbox he brought a new game for the totally lame game cube you’ve had for years? Or maybe something completely random like ANOTHER box of Legos? I mean, come on Santa, that is so elementary school.

Well, we’ve all gotten our hopes up for things that haven’t happened before. We recover eventually, but it can be pretty disappointing! I’ve learned that with my chronic illnesses, I can’t get my hopes up every time I go see a new doctor or try a new medication. Some people have trouble understanding this, but for me, there’s a big difference between having hope and getting my hopes up. The latter of the two is the one that is much more dangerous for me.

Passing time in the doctor’s office by snapchatting! Smile and designer bags under my eyes 🙂


There are a couple of reasons for this, the first being that I simply see too many new doctors, each of whom comes with their own plan for therapies/treatments/medications, and they don’t all work. The truth is, most of them don’t work! Chronic illnesses are very complex, and there aren’t very many approved treatments for them, so we (the doctors and patients) end up putting together treatments of our own and it is a lot of trial and error. Our doctors work really hard for us, and I am so grateful for that! Sadly, a lot of these meds just aren’t made specifically for our conditions and so they often don’t work out. Sometimes the side effects are too much, insurance doesn’t always approve treatments, and other times the medication just doesn’t help. Either way, if I thought each medication were going to be the fix-all, I would be incredibly disappointed much too often.

The second reason I try not to get my hopes up is that my illnesses are chronic. This means they likely won’t completely go away. I hope every day that we find a treatment plan that lets me live a much more comfortable and high functioning lifestyle, but I also know (at this point) there is no cure for my illnesses, so I’m always at risk for my symptoms coming back. This can be a daunting thought, but I work with some great doctors and have a lot of hope that eventually we will figure out a way to help me get back on my feet (literally and figuratively some days!J) and having more good days than bad.

I guess you could say that not getting my hopes up is a sort of safety net. In order to live my life with a positive attitude and to hold onto hope for a more “normal” life, I can’t get my hopes up about each of the individual treatments my doctors give me. However, as one doctor liked to remind me, attitude does make a difference, so it’s important to have hope. This is why I make a point to stay positive and have hope that we will find the right treatment eventually! One of these days a doctor is going to choose the right treatment, and when he does, I am going to be like a kid on Christmas morning that finally did get a puppy!

Here’s a puppy visual for you 🙂 He is a great therapy and gives me hope!

Because I don’t get my hopes up every time and therefore don’t get let down as easily, I am able to keep hoping every day for a better tomorrow. I hope for days with less pain. I hope for days with move activity and less napping. (Yes, I want to spend less time in bed!) I hope for times where I can eat more and expand my “safe foods.” I am hopeful that I will go back to school and get my degree(s). I am hopeful for a future that holds a more “normal” lifestyle and one that that will include fewer doctors’ appointments and more time with friends, a job that I love, and health for my family and for myself. And I hope that one day there is a cure for gastroparesis, dysautonomia, EDS, and all of the other chronic illnesses that affect me and so many other people everyday.

Laughter, loved ones, and pretty dresses

There’s a difference between getting my hopes up and being hopeful, and I have found the balance that works for me. Albert Einstein once said, “Learn from yesterday, live for today, hope for tomorrow.” I’ve learned that living one day at a time is the way to go, but hoping for a better tomorrow never hurts.

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My name is Rachel and I'm a 21 year old living with multiple chronic illnesses. My illnesses have completely my life, but they have also taught me so much about life and about myself. Although I am currently unable to attend school, I am enjoying writing and spreading awareness about these illnesses. I also love spending time with my family, cuddling with my dogs, cooking, and (attempting) to paint! I hope you enjoy reading :)

3 thoughts on “A Balance of Hope”

  1. Another wonderful and insightful post, Rachel! I am so glad that you have found that balance- the ability to approach each new treatment regime as something that may or may not work, while always remaining hopeful that you and your doctors WILL find a way in the future.

  2. I’m also chronically ill, and while no two chronic illness sufferers are the same, I do feel your pain. I too do not get my hopes up anymore. Too many doctors and 5 years later, I still find myself being misdiagnosed, and with no good treatment plan, but still we (chronic illness sufferers) prevail. Hope is a fragile thing, and being let down can take its toll emotionally. Thank you for sharing, I hope your future holds everything you want, and more good days than bad!

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