I Finally Have Permission To Be Sick

I finally have permission to be sick.  Of course I haven’t been well for over four years, but that doesn’t mean I was able to give myself permission to really take care of myself.

I come from a family of workaholics, most of whom I see as successful and look up to.  I too was burning the candle at both ends before I got ill.  I was working full time, going to school full time, and still managed to have a social life and make time for my family.   I had always been able to do “all the things” and now I can hardly to any of them.  This made me feel very inadequate when I compared myself to my family and my friends.  We’ve always pushed on, and never let anything get in our way, and I felt that I had to keep pushing on even when I knew I was hurting myself.

Having validation from a doctor might seem silly, but I desperately needed it.  All it takes is one doctor to tell you it’s all in your head (and I’ve had at least three of those) to make you question your sanity and the validity of your own feelings.  I never felt like I could surrender and really take care of myself unless someone could fill in the blank as to what was wrong with me.

I can stop feeling guilty about all the extra help I’ve gotten the last several years in school and in my everyday life, which has made me feel like I was cheating in some way.

I have been diagnosed with dysautonomia, also known as postural orthostatic tachycardia syndrome.  My doctor took my heart rate when I was laying down on the exam table and had me sit up and took it again.  I believe he said it was 40 bpm or more, than when I was laying down.  This means my heart rate increases rapidly every time I sit or stand up.  Basically the only time I have relief is when I’m lying down.  When my heart rate increases too rapidly it makes me feel dizzy, and disoriented, and basically I feel this way all the time.

What is really maddening about how long my diagnosis took was that my doctor is one of the doctors that pioneered this diagnosis.  He wrote a paper about it in college.  I think we both got distracted by the adrenal insufficiency, that this option never came up until I brought it up.  I told a friend what my symptoms were, my basic most frustrating symptoms, and she listened and she researched for me.   It’s thanks to my friend Abby who took an interest in helping me find an answer that I have this diagnosis.  She doesn’t have a medical degree, she just listened, and then I was able to take that to my doctor to have it confirmed.  I cried tears of joy when the diagnosis was confirmed.  You never know who is going to have the answers, so never stop listening.

I finally have permission to be sick.  This doesn’t mean that I’m giving up.  It just means I can now take care of myself guilt free, and start building a new life within the limitations that my illness allows.  This is a new beginning for me, one that I am feeling very hopeful about.


3 Comments (+add yours?)

  1. Joan Hewett
    Dec 18, 2013 @ 03:09:08

    My dear woman…. You are very strong in your soul. You are someone to look up to in my mind I love your tenacity and your ability to stay neutral in rather loaded topics. As your friend I wish there was more that I could have done for you. As a nurse I am glad you have a dx, just to do exactly what you said…. To cry with tears of relief and to take care of yourself. While this dx is not great, you now know it’s not in your head. As one with fibromyalgia, I know the feeling. I grateful that your sleuths friend put the pieces together for you. Now I think you can be a true roman and hold discussions and food while laying around grand cushions and couches and play the grand Dame to the hilt. Make your place the go to for debate cheer and comradery! Hail to our hostess Heather! With love and hope for you, Joanie😍


  2. Dead Men Don't Snore
    Dec 18, 2013 @ 12:36:53

    Glad you finally got a diagnosis. Even though it doesn’t change the difficulties you face, getting recognition that you are ill is an important step in learning to manage chronic illness.


  3. qrai
    Dec 19, 2013 @ 11:05:57

    I’m so happy to hear you finally have a diagnosis!
    I hope now that you know what’s wrong, you’ll find it easier to deal with. I don’t know sure how much of it is treatable (my brief research got me a “depends”) but I’m confident that there’s at least something you can do about it to make your life with it easier and crossing my fingers (and shaking bones and stuff) for a real cure!

    Big hugs to you and Sarah (and Mal, wouldn’t want him to feel left out)!
    x your favourite Raptor 😉


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