What is Wrong With Me? {#chronicallywell day 2}

31daysButtonOne of the most frustrating times of my chronic illness journey was the road to diagnosis. It took almost two years for me to be {mis}diagnosed with MS and then another year and a half for the doctors to realize I really had SLE {lupus}. Living with debilitating symptoms is hard enough but not knowing the cause adds a level of despair and powerlessness to the experience.  It doesn’t help that doctors get tired of their theories proving wrong and eventually start to insinuate that it’s all in your head.  If you are on the path to diagnosis, here are a few things I want you to know.

  • Keep a symptom log. Your doctor needs the whole story. You know your body better than anyone so if you are experiencing something new, write it down. Even if you doubt the significance or don’t see how it could possibly be connected, write it down and share it with your medical professional anyway.  Giving them as much information as possible will help them solve the puzzle of your diagnosis.
  • Advocate for yourself.  When a neurologist told me he wouldn’t order any more tests until I had an evaluation by a psychiatrist, I got myself a new doctor.  Don’t waste your time in a relationship with a physician who is not as committed to discovering the cause of your symptoms as you are.
  • Keep a paper trail.  The road to diagnosis can be long and expensive.  Always ask for a copy of your test results and carry them with you to appointments.  If a new doctor suggests a test that you have already had, have him make a copy of the result and avoid duplicating the same test {there are some tests they need to run frequently though so be open to discussing these with your medical professional}.  When you are getting a second opinion, it is helpful for the doctor to have access to the entire medical picture, not just the snapshot the referring physician sent in a referral summary.
  • Don’t give up.  You can ask my family, the diagnosis of MS never sat right with me.  They chalked it up as denial but it was a gut level feeling that I couldn’t shake.  It took a life threatening complication and many other “inexplicable” symptoms before doctors realized they were treating me for the wrong disease.  You know your body better than anyone else.  Don’t throw in the towel and get tired of playing medical detective.  Eventually, even though it may literally take years, the doctors will figure out the root cause and you will be able to mark your calendar from that day forward and begin to take your life back.
  • Get support.  Chronic illness affects nearly 1 out of 2 Americans.  You are not alone.  Find someone farther along in the chronic illness journey and let them be a source of support and encouragement as you journey to a diagnosis. The internet is such a valuable tool during this time for connecting to others going through similar situations. I recommend Rest Ministries and other similar organizations.

Diagnosis will come…eventually. Until then, don’t give up. Reach out to others, pray and take care of yourself.

Join me tomorrow for I’ve been diagnosed…now what?, day 3 of #chronicallywell.

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