Unfortunately, We Missed It

The physicians who left me undiagnosed said “we” missed the brain tumor. WE?! YOU, the 10 or 12 doctors I saw, missed that I had acromegaly. The doctor who finally made the diagnoses put his arm around my shoulder and said

 “I apologize for my profession. All the evidence is here. It should not have taken so long to diagnose you.”

What happens when you are undiagnosed? You keep trying. Your doctors begin to think you are a hypochondriac. So while your physical disease is taking its toll, your psychological and emotional needs are not only not being met- but rather, they are taking a beating.

Get another opinion, your friends say. This is not so easy when you have to first get a referral, make sure the insurance will pay for it, travel several hours each way to the specialist’s office, and wait- and then travel back.

This is Jill’s story, and perhaps it is yours too. How did Jill manage?

  • She had a loving, and supportive spouse who was willing and able to start coming with her to the doctor’s to back her up. He could, and did, confirm her symptoms. Dear Tommy- what would she have done without you?
  • She began to see a psychologist who not only listened, he believed her. He not only believed her, he supported her efforts to advocate for herself. And then, he came to admire her for her spirit of forgiveness for all those who had not taken her seriously and whose carelessness had led to days, and weeks, and months and years of unnecessary suffering. He came to admire her resilience- that she could keep a positive outlook on life and find joy in her family despite all she had gone through. He came to admire her perseverance, when she was diagnosed with yet a second rare disease: Myasthenia Gravis
  • She kept her faith: she knew that God was her loving father and that He was God!
  • She turned her pain into gain for fellow suffers with acromegaly, by encouraging them to ask for help. Jill writes, “Therapy is ok! Asking for help is a good thing! No one needs or should be ashamed to seek therapy when dealing with a chronic anything.  It is a sign of strength, not weakness. It is important to not only treat the physical but the emotion and spirit. When we, and the whole world, can catch hold of this, there can be a much easier time accepting what is and the new normal some must face. I would be so lost without the new coping skills “tools” that I have been taught! I share this several times a week and it is life changing for most. I figure it cost me dealing with adversity and I can at least share what has helped me! A good therapist, psychologist or counselor can teach you skills that can last  a lifetime!”

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