Note to My Younger Self

You have just been diagnosed with a chronic illness. It is not the end of the world. Life will go on. It will be different, but it will go on. It will not be normal, but you never really wanted to be normal anyway, did you?

As you start this journey, you will think that things are mostly the same, you just have a new diagnosis. Should I tell you otherwise, that they are not mostly the same? Will it help you to know that with each passing year you will realize how much more different you are than the healthy people in your midst? That you will not have the same opportunities available to you, but that you will still have lots of opportunities? I don’t know if I should tell you that one. But it is the truth, and I really do wish I had known it a long time ago and stopped denying the fact that I was living a new reality.

You will try many things in the attempt to feel better, to get better, to make the illness go away. Some of them will help, some of them will not. The trying itself will help you to cope, but do not spend so much time researching and trying all these options that you forget to live your life.

Since you are so young, no one thinks you are sick, and the truth is, you don’t really either right now. But you are, your body has something wrong with it, and it is not your fault. But you really can’t do all the things everyone else can, and you do not need to feel guilty about it, or less than. You will tire yourself out trying to keep up, let yourself rest and get your energy back, this journey is long, and can be exhausting.

You will often feel very alone in your everyday life, especially at first. You will feel like no one understands you. And most of them don’t, not yet anyway. But sooner or later you will meet others like yourself, who deal with the same pain, fatigue, and loss that you do. And you will learn you are not alone in chronic illness. And when you find those others, you will feel more at home in your body. And with those who are not ill.

There will be hours, days, weeks, and even months when you think you can’t go on, the pain is too bad, the fatigue too consuming. You will feel stuck in a fog. You will obsess about finding a bathroom. Your mind will become consumed with all of this. But like everything else in life, this intensity will pass. You will not return to normal, but you will regain functionality.

You have been diagnosed with fibromyalgia. You have been diagnosed with interstitial cystitis. Others will tell you these diseases do not define you, but they do. Just remember that they are not the only thing that defines you, they are part of you, but not all of you.

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8 responses to “Note to My Younger Self

  1. Thank you so much. I loved when you said, “You will try many things in the attempt to feel better, to get better, to make the illness go away. Some of them will help, some of them will not. The trying itself will help you to cope, but do not spend so much time researching and trying all these options that you forget to live your life.” I can TOTALLY relate to this. I’m still trying to learn NOT to forget to live my life. That’s a hard one but thankfully I have friends and family who remind me of the importance of living for the moment. That’s sometimes all we have. Anyhow, thank you so much for this post. I’m going to re-blog this one :o)
    Blessings,
    Carol

    • I appreciate the reblog. I am known by friends and family to try to control things by finding information. Finding info. is good, but not when it gets obsessive. It is very helpful in my job where I work with students with severe disabilities, but there it is so much easier not to get obsessive about it.

      • Thank you. 🙂 I’m still learning how to do this…boy, is it hard. One of my favorite songs is “Live Like You Were Dying”. Being in the moment is so important for those of us who live with chronic illness. I’m learning to appreciate the little things in life and not obsess.

  2. Reblogged this on Forget Me Not and commented:
    This blog spoke directly to my heart and reminded me of the importance of “living” in the moment and not allowing chronic illness to define every aspect of my life. This is a hard balance to obtain when faced with illness head-on and non-stop. I’m thankful for the family and friends who are a living example to how it’s done 🙂

  3. I loved this post. As someone who suffers from almost chronic pain from uterine fibrosis I know how lonely it can get, how important it is not to let it define who and what you are. Thank you. 😀

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