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Posted on 16. May 2013

You DO Listen, You DO Care

by Tammie Allegro

"Your pain is caused by your weight. Just lose a little weight, and the pain should get better. Oh yeah, you should really be exercising, too!" These were the actual words that my former physician said to me when I was explaining the chronic pain and inflammation I had been dealing with for the past two years. I should have run out his office screaming and never returned. Instead, I believed his assessment; I started working out again, and I tried to lose weight. I even returned to the Zumba class that I loved so much, only to find out that moving made everything worse. This created such a sense of failure for me. I began to think I would always be in pain and no one would ever understand me. I resolved to just buck up and be stronger.

Once the pain in my shoulders got to the level of unbearable and began waking me from a dead sleep, my husband encouraged me to try speaking to our new doctor. Since we both had been so pleased with his bedside manner, I considered it. Then, after a couple of months of struggling and losing sleep, I finally gave in and made the appointment. It was a week-and-a-half wait, but when the day finally came, I felt like I was auditioning for a school play. I was so nervous, I thought I was going to lose my mind.

Walking into the office, I got nervous and started talking myself out of it. This pain is all in my head, right? But once they called my name, there was no turning back. I walked into the little room and settled into the office chair. I was ushered into the exam room by a kind nurse who was not much older than my daughter. The sweet young man began asking me what felt like 100 questions. When he was done, he repeated everything back to me to make sure he didn't miss anything. He just kept reassuring me and telling me that he likes to be thorough and that the doctor likes to have as much information as possible. I was thrilled to see how much this young man cared about me and my issue. Never once did he mention my weight or the possibility that I needed to see a therapist. Once he gathered all the information, he went outside and consulted with my doctor. Within a couple of minutes, they were both in the room with me and started to walk through everything I had just divulged. My doctor asked questions about things that I wouldn't have thought to mention. He looked at me with compassion that I hadn't received in so long. He said "Let's get you a diagnosis and take care of the pain for you. It's not your weight; it's chronic, and you need help."

I wanted to hug him and have a good cry. For the first time in years, I felt like there was hope for me. He healed the hurt that my previous doctor caused. This man restored my faith in doctors and in me. I didn't feel crazy anymore. He could see from the look in my eyes that I wasn't making anything up, and I could see from the look in his eyes that he really wanted to help me.

In every facet of life, there are amazing people and unimpressive people. For every doctor who won't listen, there are 100 who not only listen but who actually care. I am realizing in the journey I am now on, that I have the power to decide which type of doctor I want to see. There was a time when I chose my doctor based on how quickly he or she got me in and out of the office. Now, I need a doctor who does things the old-fashioned way. That's what helped me get a diagnosis, and it's what is going to help me get the treatment I need.

Do you have an amazing doctor who heard you and helped you? Share your story. Give them the kudos they deserve.


Comments (6) -

6:52 AM on Friday, May 17, 2013

Thank you for writing this! I identified with it so much, I cried reading it.
When I first got sick, before I was Dx'd with CVID, I had an Intestinal Infection for a year-most people lose a ton of weight, but I gained weight. No one knows why.
I had a few bad experiences with Docs who didn't believe me when I told them what I ate in a typical day,and that also wanted  me to push through the pain for the sake of exercise and I did it...with no results except becoming bed ridden with pain. I felt being sick was my fault because I couldn't control my weight, I couldn't exercise enough, because I wasn't working hard enough in therapy. Sometimes I felt that it was not just my Doctor that had this point of view but also friends and family who had a hard time understanding, and felt it best to go along with the Dr's conclusions.

Finally, I scheduled an appt w/ an Immunologist.

I was certain he would focus on my weight, my mental health, and send me packing. He looked at my paper work from tons of Doctors and said "No one has an Intestinal Infection for a whole year without something else being wrong"

It felt like I could breathe again.  

He ordered tests, set me up with some other specialists, and I had a DX in 2 weeks. Not a word about weight or mental health.

Now, 1 year of IVIG completed, I am starting to feel a little better. I am slowly adding some walking into my routine and eating healthy meals.
When I went to my 1 year follow up and told this to my Immunologist he said "Don't give up. You're doing great."

I so needed and appreciated that positive re-enforcement.

Words are important, they can hurt or heal...we must choose them very carefully.

Thank you again for this post. Smile

11:43 AM on Friday, May 17, 2013

Wow, what a well written story that I could clearly identify with!
I have not had the problem with Drs not believing the pain I am in,
but when medications reached their limit as far as dose, I was referred
to a Dr that specialized in Rehab medicine.  His RN put me through what
also felt like a 100 questions, plus the Dr himself Did Not look at
my referring Drs notes, until he had seen me!
I have taken treatments that have worked somewhat, but only the Dr knows best what is necessary.
Thanks for writing.

1:31 PM on Friday, May 17, 2013

I have also felt like a loser after seeing a doctor. My first neurologist said I had a "cosmetic problem." My second one wouldn't tell me any of his thoughts when a diagnosis was not found easily. He said that I research too much and would worry myself too much. Finally, the third numerologist talked to me like the highly educated woman that I am. He always gives it too me straight and asks my opinions. I was quickly prescribed IVIg although I didn't meet the exact criteria. I regained almost all of the function of my hands. Hooray!

Another problem that I have had over the years is also related to weight gain. I had been complaining of fatigue since 2002. I was always told it was depression or obesity. Just last week my primary doctor took me seriously and didn't say exercise. Thank the Lord! I think this problem will improve as well.

Thank you for sharing.

2:31 PM on Friday, May 17, 2013

Thank you for writing. I too have been in a situation where my doctor pooh-pooed my concerns. I finally found an immunologist, he diagnosed CVID, and I now am on track. So many of us suffer needlessly until a doctor really listens.  

Betty M Gordon
5:35 AM on Sunday, May 19, 2013

Doesn't it amaze you when yo uhear comments such as the blog from Tammie and those in comments above?  

I came to the conclusion many years ago after first belieivng these nonsensical remarks, and then realizing the DOCTORS were wrong, that they did not have experience or knowledge to deal with what I had.

Then I started listening to my "little voice" inside my head that said "I have a serious problem." Took 13 years but I finally found an ENT who thought outside the box and correctly diagnosed not only my PIDD, my dizziness, but also my daughter's brian tumor. Would I could clone him.

Erin Cochran
9:17 AM on Friday, June 21, 2013

I also struggled for many years to find a diagnosis (sick since I was an infant, diagnosed at age 27 with CVID).  Over the course of almost 3 decades doctors told me everything from "you're mentally ill" to "your parents have Munchhausen By Proxy Syndrome" to "you're a drug seeker." Of course, I also had some doctors who believed me but had no idea where to begin looking for answers.  At one point I even went to see a psychologist to make sure I wasn't crazy. Finally I went to see an infectious disease doctor after having to be on IV antibiotics for 10 weeks due to a sinus infection that penetrated the bone, and he knew what tests to run to diagnose me.  Some doctors have huge egos, and if they can't immediately see what's wrong with you, if they don't immediately know the answers, you must be making it up because they are so smart there's no way you could have an illness that they've never heard of or can't diagnose. Diagnosis delays are a huge problem, because not only do they affect our emotional health by making us doubt ourselves and causing us stress by being sick and having no answers, they also harm our physical health because the longer you're sick and not receiving treatment, the more damage is done to your body and organs - which leads to shorter lifespans and less quality of life. I am glad that there are communities online now where rare disease patients and undiagnosed patients can encourage each other not to give up and to listen to their bodies.  The doctors you see don't live in your body, YOU do.  And if you know something is wrong, just keep going to however many doctors you need to go to (I went to over 100 in my life) in order to get answers.  

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