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The Difference Between Having Hope and Getting My Hopes Up About Treatments

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Did you ever write a letter to Santa asking for a puppy or perhaps the new Xbox 360? And maybe Santa brought you a stuffed animal puppy or a 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.

woman in a black shirt with blonde hair taking a selfie in the doctor's office
Snapchatting in the doctor’s office to pass the time

We’ve all gotten our hopes up for things that haven’t happened. 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.

There are a couple of reasons for this, the first being I simply see too many new doctors, each of whom comes with their own plan for therapies/treatments/medications, and not all of them 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 was going to be the fix-all, I would be incredibly disappointed far too often.

four women wearing dresses and smiling
Laughs, loved ones and pretty dresses – a few things that give me hope

The second reason I try not to get my hopes up is because my illnesses are chronic. This means they likely won’t completely go away. I hope every day we find a treatment plan that allows me to 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 (figuratively and literally some days!) and have 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 who finally got a puppy!

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 more 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 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 doctor appointments and more time with friends, a job I love, and good health for my family and for myself. And I hope that one day there will be a cure for gastroparesis, dysautonomia, Ehlers-Danlos Syndrome and all of the other chronic illnesses that affect me and so many other people every day.

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.

Follow this journey on Positively Rachel.

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Originally published: December 9, 2016
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