To me, from me: six years later

Six years ago, March 10, 2010, was the day I was diagnosed with gastroparesis, yet it would be almost another three years before the term “chronic illness” even entered my vocabulary. If I could, here’s what 2016 me would tell that 18 year old girl.

Hi Catherine,

You’ve been sick for five months now. You just got home from your first gastroenterology appointment where after taking your history, pressing on your belly and asking you some questions, the doctor wrote a few words on a post-it note, handed it to you, and then said them out loud.

Post-viral gastroparesis.

Huh? You’ve never heard of it, but now that you’re home and consulting the internet you are having a bit of a lightbulb moment. This is it! This describes what’s been happening to you! That flu you had in October seems to have damaged some of the nerves in your stomach. Who knew that was even possible? The doctor told you that these cases usually resolve within two years, so slowly you’re going to get better and better, and in another year and a half you should be good as new. For now, you have a new medication to take and some dietary guidelines to follow. Things don’t seem so bad, but my goodness you can’t imagine being sick for another eighteen months.

IMG_0553

Just a month or two later in New York City. Poor girl has no idea what’s coming!

You don’t even know the half of it yet. You don’t know that in three years you will be back in this doctor’s office because while things do get somewhat better for a while, they’re going to get worse. Much worse. You don’t know that this is because you have a genetic condition. You don’t know that this doctor you’ve only met once and who you find intimidating is going to become one of your greatest allies. You don’t know that you’re going to have to give up your education, your job, your independence. You don’t know how familiar the hospital is going to become or how many procedures, tests and surgeries you are going to undergo. You don’t know that eighteen months will seem like nothing when all of a sudden you’re facing the reality that you’re going to be sick for the rest of your life.

And you don’t need to know any of that right now, because when the time comes, you’re going to be okay. You’re going to have great people by your side every step of the way, some of whom you’ve met and some of whom you’ll meet in the years to come, and you’re going to make it through. So you don’t need to worry about any of that now.

You still have three years of ‘normal’ living to get through. You have three years of school, work and all around busyness to survive. Right now you only really need to know one thing.

You have a chronic illness.

I know you, so I know that you’re probably thinking sure whatever, but don’t shrug this off. This is important and you need to remember it. You don’t have, “oh it’s just a random stomach thing but I’m fine.”

You have a chronic illness.

Over the next few years you’re going to feel like you’re not good enough. You’re going to be hard on yourself for feeling stressed out by things that seem like no sweat to other people. You will doubt your capabilities, and in an effort to prove to yourself and others that you are cut out for this and that you can keep up, you’re going to push yourself harder than you should.

You’re going to feel like an outcast. You will feel left out because you won’t want to go out late at night and stay out early into the morning. You will mistake your lack of energy for a personality problem. You will find yourself wondering why you’re so boring and why you just don’t seem to fit in.

You are going to have this constant feeling of not really being understood yet not really knowing why. You are going to feel like other people just don’t get it, even though you don’t really know what exactly ‘it’ is that they don’t get. You are going to feel like things are just harder for you and then you will feel pathetic for thinking that. Life is going to be a challenge and you’re not going to know why, because right now, on this day that you received a diagnosis, you are still missing a big piece of the equation.

So let me tell you one more time. You have a chronic illness.

Please, don’t push yourself past the breaking point. Please, don’t compare yourself to other people. And please, don’t underestimate the challenges that come along with chronic illness. You have to take care of yourself. You have to let go of being perfect. And you have to listen to your body.

No one is going to know just how hard you are trying. But I know. No one is going to know the toll that life is taking on your body, not even you. But I know, because I’m paying that toll now.

Good job

As hard as the next three years are going to be, they’re nothing compared to the years that will follow and so I want you to enjoy them as much as possible! And in order to get the most out of those years you need to be kind to yourself. You need to be patient with yourself. You need to let yourself off the hook sometimes.

I know what I’m talking about here. I wish I didn’t, but I do. So hear me out, buddy. You are good enough. You have nothing to prove. And you are doing your best. You just have a chronic illness, that’s all.

No matter what happens, and no matter how overwhelmed, stressed or scared you are, I want you to know that you’re going to be okay.

We are going to find our way. We always do.

You’ve got this!

17 thoughts on “To me, from me: six years later

  1. I thank you that on your good days you strive to help others understand, and those that do have chronic illnesses to be encouraged to go on. I am 8 years into this, with growing auto immune diseases without a chance of cure and it is for the rest of my life. I am optimistic to slow it down, to get the most of everyday too, but all my support group does not have this. They think I can just think positive, and it will all go away, and since it is not, I must be doing it all wrong. So, it is nice to read your posts you give so much when you can and it is appreciated. I do get it…prayers, to you and all the rest struggling from me on my good day… hugs all around and we go on… ;p

    • Positive mindset can sure help…but it’s not the magical fairy dust answer that lots of people seem to think it is, hey? It’s hard when people don’t get that, but I can tell you that you are definitely NOT doing it wrong. You’re doing a good job 🙂 Hugs back to you!

  2. Wow, this post is helpful in understanding the sudden (& vast) change in life experiences of before & after – also understand a little better why the EDS diagnosis helps now.

    & also – lol, teenage selves! for me, I used to wonder how anyone could struggle with issues (like, mental health) for AGES like hello people do you not want to get better?, & always thought like fine, what is anxiety disorder I will get well IN NO TIME.

    Joke – in reality I spent one year believing I was making up this mental condition (for which really, I didn’t actually have!), another year flailing at life .. & it was only close to 2 yrs post-diagnosis (which means abt 4.5 years of struggling later – given how I kept things to myself for 2.5 years prior) that my life is starting to piece together again. Haha #teenageselfwhat?

    But for now – keep calm & keep writing! I feel a connection to you & your writing, but I really don’t know why .. & truly think it could solely be because we are the same age. Hahahaha keep on keeping on dear x

  3. I know so many people close to me who suffer almost every day from similar complaints. You have a way with words that give people the courage to think and feel like one day they really will feel better and I thank you for it Margaret

  4. Thanks, Catherine, for sharing your stories! Your words always help me feel more understood & less alone in this chronic illness journey.

  5. I don’t know why but I literally cried like a baby while reading this. I’ve had my chronic illness (Churg-Strauss Syndrome) for over five years. There are so many days I want to give up. You have so much spirit & hope I wish you could send some my way. I wake up most mornings feeling hopeless & filled with despair. Some days I just don’t want to even get out of bed. I just wanted you to know that I admire you. I wish I had your heart & spirit! Any words of advice to give me? I follow your blog & really enjoy your stories. I wish you all the best– you sure deserve it.

    • Well I just looked up Churg-Strauss Syndrome (have you commented before? I have a vague recollection of looking this up once before…anyway) and saw the word “eosinophil” so I know that it’s all around bad news bears. I’m sorry you’re having such a tough time. I really wish that I had some great magic answer for you, but sadly I don’t. I am genetically programmed to be a positive person so that definitely helps. But even still, I have days where I wake up feeling hopeless and sometimes weeks will go by and I’ll wonder how I’m ever supposed to be happy again. Any advice I can give you, like “focus on the good instead of the bad” is so much easier said than done. So I’m just going to send some positive vibes your way and hope that one day soon you will wake up feeling a little bit more hopeful!

    • I’m both glad and sad that you can relate. Wish you didn’t have GP to deal with but glad that the internet connects so many of us GP warriors to each other 🙂

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