Some say the worst thing you can experience is childbirth or stepping on a lego in the middle of the night. I say the worst pain comes from telling a medical professional how much pain you are in, and they don’t believe you. The emotional trauma I endured always seemed to far outweigh the physical pain at some points because getting support during my time of need was vital.

After diagnosis after diagnosis, test after test, doctor after doctor, and frustration beyond all frustrations, I received my lupus diagnosis from my primary care and my family practice physician with EXTENSIVE testing. However as my journey continued, rheumatologists were not at all helpful. Here are some of the actual things that were said to me in an actual physician’s office by actual medical doctors:

• “White people can’t get Lupus. I’m just putting that you have a tissue disorder. That’s easier for you to get life insurance anyways.” Keep in mind, that my DNA is an eclectic mix of backgrounds but he made assumptions as well as decided to be lazy without a single test run.
• “Since you aren’t in pain right now, I’d rather just diagnosis you with fibromyalgia.”
• “Wow. I’d say you have 10 years to live at the most.”
• “But you look so pretty, so I’m sure you are gonna be just fine.”
• “Since no one in your family has lupus, I can safely assume it’s not Lupus.”
• “Your tests show you have brain damage, but I’m not that worried about it. Just get some rest.”
• “I think you are just tired from being a mom. Maybe yoga would help.”
• “If you don’t take this medication I recommend, I don’t want to see you here again.”
• “I get that you’re in pain so what do you want me to do about it?!”

Not only were these awful things said by those who swore an oath to help me & treat me, but I have witnesses who were always with me and were as flabbergasted as I was. Currently, my neurologist, family care physician, internist, obstetrician, and pain management doctor have all been wonderful. It’s just when I try to find a rheumatologist, the door to help is once again slammed in my face.

The worst incident was when I FINALLY went back to my previous rheumatologist (All out of pocket for $300 and out of network), and I was told within 3 minutes and no tests ran that I had fibromyalgia. Ummmm, shouldn’t we do some bloodwork?! Don’t you want to ask about my medical history?! I was rushed in with a diagnosis thrown at me and she INSISTED I do my bloodwork in the office. She assured me that she would have my tests in a week. WRONG!

I get an email saying they scheduled a follow-up (They didn’t even ask me to book one, they just did it) and it happened to be on the same day I had another doctor’s appointment. I called to ask about my bloodwork and get met with the RUDEST attitude to rival all attitudes saying she would not be giving me my bloodwork until I come in and pay $250 for a follow-up. Then I asked to reschedule my appointment since it was scheduled without my knowledge and she proceeds to tell me how that was my problem and I should read the stack of papers they give me when I left. GEEZ! If you think this lady hated me, you should read their reviews….

The whole ordeal became a TikTok debate and let’s just say I had two of my physicians who went to battle by my side and we all received my bloodwork. I never went back!!! For those who live with chronic illness, I’m sure a lot of this is beyond familiar to you. Just remember that not all physicians will fight against you, but so many will fight FOR you. For those who aren’t on your side, do your research and exercise your right to find the doctor that’s the best fit for you. With medical costs rising, I know that can be beyond challenging but I promise you, having someone in your corner can make a world of difference.

Remember this always. You have the right: to be treated with respect, be believed for all of your issues, have all of your concerns heard, and be medically treated with care! Anything less is not worth the gas in your car to get there!