Here’s My Diagnosis Story. What’s Yours?

What’s your diagnosis journey? Our patient advocate Lana describes hers.

Here's My Diagnosis Story. What's Yours?If you were reading a book or watching a movie about a person with a disease, the main character’s chronic illness would have some dramatic beginning: a fall, an accident, a lump, or a call from the doctor about a test result.

But in real life, chronic illness doesn’t always work that way. In fact, most of us got sick gradually and then suddenly. We usually can’t pinpoint an event in our lives when the onset of symptoms started.

 

What’s Wrong With Me?

What has been your diagnosis journey? Our patient advocate Lana describes hers.

What’s Wrong With Me?

If you were reading a book or watching a movie about a person with a disease, the main character’s chronic illness would have some dramatic beginning: a fall, an accident, a lump, or a call from the doctor about a test result. But in real life, chronic illness doesn’t always work that way. In fact, most of us got sick gradually and then suddenly. We usually can’t pinpoint an event in our lives when the onset of symptoms started.

My Story

When I tell my story, I tell people I have been sick for a long time—long before any doctor diagnosed me. I identify the start of my symptoms by looking back at my mid-20s when I had to overcome some of the most stressful events of my life. Shortly after, I developed debilitating fatigue and always felt like I was coming down with the flu. I look back at the years that followed, when I endured muscle and joint pain, headaches, and unrelenting chronic fatigue.

When no medical tests gave answers, I was given medication for anxiety and depression. At some point, my doctors made me believe that my symptoms were all in my head. And another benchmark came in 2006 when my gallbladder stopped functioning.

Read more at http://www.fibromyalgiaconnect.com/fibromyalgia-articles/468-what-s-wrong-with-me?category=treatment

Don’t let a misdiagnosis deter you

Standing Focus

I do not recall the exact date that my symptoms started or even what triggered my symptoms.  I do not even recall the date of my diagnosis.  What I do know is that it took me nearly ten years to get a correct diagnosis and I recall many of the details of that experience.  I would communicate to my doctors that I was experiencing all over body pain, a collection of unexplained and unusual symptoms and extreme exhaustion. I was nodding off during the day no matter how much sleep I got and most mornings, waking up was a challenge. I would find that some doctors would look at me as if I was irrational while others would focus on diagnosing and treating my symptoms.   I endured criticism not only from the medical community but also from friends and family.

I soon realized that my experience, albeit challenging, was a blessing in disguise.  After all, receiving a diagnosis was a result of my being a strong advocate for myself and working with my doctors to find the root cause of my symptoms. I did my own research, made my own notes about my symptoms and what trigged them, and I checked my notes every time I went to see a doctor.  Moreover, the years of trying to find answers taught me patience, dedication, strength and survival and prepared me for life with chronic illness.

Misdiagnosis is common medical error that occurs in fifteen percent of medical cases.  Misdiagnoses can have dire consequences, including unneeded and delayed treatments and physical and emotional suffering.  From experience, I know how frustrating it is to experience misdiagnosis after misdiagnosis as you seek answers and treatment. If you are dealing with a lack of answers and wondering what else you can do, here are some ways in which you can help yourself.

  • Learn who you can confide in and who you cannot.  Some of your family and friends will be supportive and others won’t.  Do not let the latter group dissuade you from finding answers or allow you to believe that what you are experiencing isn’t real. 
  • Find doctors who will listen and if you come across one who won’t, don’t take it personally, move on and find one that will.
  • Write down your symptoms in a journal including what triggers those symptoms and be prepared to share that information with your doctor.
  • Be your own advocate and stand up for yourself. Arm yourself with the knowledge you need to get a diagnosis while your condition is still manageable.
  • If you someone tells you “it’s all in your head,” don’t believe them and don’t let them deter you regardless of what type of medical degree they have or the influence that they have on your life.

Whatever you do, don’t give up hope. It took me nearly ten years to find answers and I spent a great deal of time feeling frustrated with the lack of answers and the cynical people that came my way.  The way I see it is that a diagnosis only gives you some closure; it does not instruct you on how to heal and to continue to have a productive life (with or without a diagnosis) – that choice is yours alone.