Chronic Illness Chronicles

I wanted to reach out and share a few thoughts that have been weighing on me. This is in no way sent with any malice or ill intent.  I respect your long years of hard work and dedication to become a doctor. I know there was a reason you continued throughout the incredibly challenging school, boards, rounds, etc. I appreciate your desire to help patients.

That being said, I would like to offer some feedback as one of your former patients. When we first met I was thrilled. You made me feel heard and no GI doctor has done that in at least 6/7 years. As you can tell by my long list of previous GI doctors. I left your office with hope. Something I have not had for years. You told me you would get to the bottom of this. You told me you cared and can see a few things that may have been missed. You told me you would listen to me and help. 

We started with a series of tests. Unfortunately they all came back inconclusive as to what was causing my debilitating symptoms. They also disproved your original ideas. Once we hit the end of October/start of November you began to give up. You may not have felt it, but I saw the signs that I am, unfortunately, all too familiar with from doctors. You were refusing to even give my dietitian who specializes in complex chronic illnesses the respect of opening the discussion for her suggestions. I had to begin to beg for your help. For you to not give up on me. For someone to help me, to keep me alive. After one of the scans I had to strongly advocate for I received results that made me doubt any results I had received from your office.

Now I understand you are not always the doctor reading those scans, but at the end of the day I am your patient. 

As I continued to suffer and further decline I was left to advocate for myself. Which I will never not do. But I was malnourished to the point I lost my period, which your response was have you checked your thyroid? I told you the max amount of calories I was able to get in a day by force feeding through debilitating pain was 500 or under. I begged and cried in front of you for a nutrition plan. Any type of support offered I would have taken. But instead I was written off. I left that day crying. Hope continued to be so far out of reach.

Now I have no idea what your reason and drive to become a doctor was. Going forward I hope you see your patients as people. I may just be a % at work to you but my health is 100% my life. You may only see me 1 hour every few months but I lived 24/7 with those debilitating symptoms. I hope when you come across another complex patient you think of me, you listen to them, you make the referrals. I hope you think back to yourself as a 24/25 year old women and imagine watching yourself deteriorate. Having to give up on your dreams. I hope you see your patients and think “if they were my child/sibling/spouse/parent what would I want for them”. I hope you lessen your case load and start thinking of human first care. I hope you continue your studies into rare diseases such as MALS that present as gastrointestinal. I hope you collaborate with your future patients care team. I hope you believe your patients and never give up on them. 

A few days after I was discharged I had one of my doctors who also dismissed me, refused to give a referral to a vascular surgeon, and straight up told me I do not have the symptoms for MALS call me and apologize. They asked who suggested the CTA or if I just kept fighting for me. I have never had a doctor own up to their mistakes. That meant the world.

Again, I mean no ill intent. However, mistakes are how you learn and I only wish you notice the signs of complex patients and get them the care they need before its too late. I thank you for the help you were able to provide me along my journey. I appreciate your willingness to read what I had to say. 

Best,

Lauren