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To the Doctors of Patients With Invisible Illnesses Hoping for a Diagnosis

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This letter is on behalf of the thousands of patients who have come to you in the hope that you can give them a small piece of normalcy again. 

We came to you in tears, in pain and in disappointment. Our bodies have let us down. They’ve taken us hostage in our own skin. Our bodies have waged war against our every fibers. So yes, we came to you in tears we could not control. We reached out our hand to you in hopes you would take it and lead us to a more peaceful place. No, we didn’t expect miracles. And we didn’t expect to be cured. But we wanted answers and something as simple as a plan.

We heard good things about you. We held our breath as we decided to take another leap of faith and schedule yet another appointment with yet another specialist.

But what you may have misunderstood about me is that I have things I would rather be doing. I would rather be spending time at home bonding with my children, rather than sitting in a cold, sterile waiting room with the news playing in the background. Even snuggling at home with my dogs while reading a good book is on my “would rather do” list, rather than sit here waiting for you. As I wait for you, my nerves take over. Your reviews are great. You have a few who say you were less than understanding and you barely gave them the time of day, but I chalk that up to that being the person who can never be pleased. It won’t be like that for me. I’m a bright patient and kind person. I’ve come prepared and I’ve done my homework. Certainly you will appreciate that and will be moved to help. You will see me as the person that I am — a mother, wife, friend, daughter — you will see me as a person this time. Not as another medical chart, another ICD-9 code, or a woman who has too much time on her hands, spends way too much time Googling and needs to be sent for a psychiatric evaluation. 

No, this time will be different. I will tell you my endless amount of struggles and symptoms for the last however many years, and you will be quick to give me a diagnosis. I will take a deep sigh of relief and brace myself for the next stage of my life: slow but hopefully steady recovery…

That is how my fantasy always goes.  Now back to reality…

Reality becomes the bitter sting I am quite used to. Reality is quick to remind me that some doctors have become jaded in the world we live in. They may be overworked and utterly exhausted, and the organizations that pay them may have unrealistic expectations of how many patients the doctor can see in a day. Patients who were once people may have become figures of sales and dollar signs as pharmaceutical reps come and go with their pitches and take the doctor’s time that an ailing patient needs.

The doctor may have learned to rely only on what is seen on those mysterious papers set before him. He or she may think if there’s nothing in your blood work, then you must be fine. “I don’t see any of the issues you are telling me. You look healthy. You’re staying busy. Why are you wasting my time?” I often wonder if the doctor in his or her checked-out stage is actually thinking that about me, because all too many times have I been left to feel that way. Leaving the doctor’s office trying desperately to hold back tears because Lord forbid you give them another reason to say it is all in your head. Because the pain I feel, the ache, the stabbing, the burning, the extreme exhaustion that is crippling my life is not in my head. It’s not something I can “positively talk myself out of.”  

What you can’t see because I look fine to you is how hard I am trying to feel “normal.” I wear makeup because I feel like a garbage can on the inside. I smile and am cheery to you not because I don’t hurt or am not exhausted and dying for help, but because I am hopeful and holding onto the last bit of normalcy I have left. I am also strong. I have struggled for endless years chronically fighting something. So the pain that seven years ago I would have rated as a 10 is now only a four. So if I seem to be downplaying how I feel, it is because I have become used to feeling sickly. I’m so used to feeling sick that I no longer recognize the feeling of “coming down” with something. Because I always feel like I am coming down with something, weak, exhausted and riddled with pain. Always.

However, I am grateful and fortunate beyond words that after seven years of being given the wrong diagnosis, having muscle relaxers thrown at me and calling that treatment, I finally found a doctor who believes me when I say I feel bad. He doesn’t want to see the pictures I’ve taken to prove the things I go through. He says what I say is enough. He wants me better. He wants to help. He is treating me with autoimmune-disease-modifying drugs and when necessary, even steroids. Steroids when I’m not even showing inflammation in my blood work. Why? Because inflammation doesn’t always show up in my test results. And just because it doesn’t show up, that doesn’t mean it doesn’t exist for me.

Just like the wind. We feel it, we hear it, but we cannot see it. We just feel the pain that cannot always be seen.

So to the doctor out there that saw me and the thousands of others, the doctor who made up their mind about me because I appeared to be “just fine,” or maybe just more work than you would like, please read this with an open mind, as a kindly reminder that we the patients are not just numbers, insurance issues or someone else’s problem. We are human. Real and ready to be helped. 

Follow this journey on Broken but Breathing…

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 9, 2016
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