Hope In the Waiting- Searching for a Diagnosis

September 28, 2015 | Posted in: Chronic Illness and Diagnosis

Maybe it started with a strange tingle in your hand or a pressing fatigue that could never be satisfied. It could have been that deep knowing that something was wrong that set you off. However it began, now you find yourself in the waiting. Like so many others, you’ve been to countless doctors and clinics searching for answers, only to come away disappointed and confused time after time. Today, these are my heartfelt words to you.


  • I’m so sorry. I am sorry that your world has been turned upside down, that all that was once certain has now been replaced by a question mark. I am sorry for the nights that you dream in whole and wake up in the fragmented pieces that have become your new reality. I am sorry for the parts of you that have been torn away without mercy. I am sorry for the people who cannot pause to grieve with you for a moment but instead find they must distance themselves from your pain or spend every waking moment of their lives offering unsolicited advice. I am sorry for your pain and your fear, for your loneliness and for your ache to be who your once were. I am sorry.


  • I know you want me to tell you that this is all going to go away that one beautiful morning you will wake to find this was all a nightmare and none of it was ever real. I am sorry to report, that will not happen. But it may very well get easier with time. You will learn new coping mechanisms. You’ll learn what voices to let in and which to ignore. You’ll discover strength you never knew you had in the deep reservoirs of your soul and you’ll tap into the sources of everlasting strength in new, deeper ways. You’ll learn who your real friends are. You’ll remember what really matters in life, what kind of legacy you want to leave and life you want to live. And you’ll do it.


  • Some people are going to tell you that you are not really sick. This will come in varying degrees and extremes. Some may feel that you just don’t handle pain well; others may determine you need attention and still others may think you are making the whole think up. Resist the urge to slap them across the face or make tiny voodoo dolls replicating them. They are speaking from their ignorance. They don’t know what it is to walk this road. Thank God for their ignorance. Thank God on their behalf that they have absolutely, positively no clue what they are talking about. A neurologist at Mayo Clinic once told me, “Sometimes answers just don’t come. Sometimes they don’t come in the time frame we’d like them to.” So true. I’d like to add, “Sometimes the answer is that a lot of people will speak out of their ignorance along the way. You should ignore them.”


  • You are going to be okay. You are going to get through this. No matter how long it takes. No matter how hard, how lonely it gets—— You are going to be okay.


  • Not everyone in your world is going to know what to do with this. Some of the people you love the most might really mess it up. You’re going to have to wipe some grace all over that and move on. There’s no roadmap for this. No one picked this. Be vocal about what you need, but extend grace while the others in your world figure out how to make it happen. Did I mention that you’re going to be okay?

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