Why Did the Diagnosis Take So Long?

Assumptions about what RA usually looks like can be barriers to people getting a diagnosis. For Deen Allen of Parlin, NJ, being an African-American man presented a huge challenge to getting treatment. Allen says that, based on his race, some ER doctors assumed he was “drug seeking.”

I had to fight like hell to get treatment. It was it was brutal. No one would take me seriously. No one would listen.

Interviewer: Why did the diagnosis take so long?

This sort of tackles two questions. One, it was because they had the initial diagnosis of IBD (irritable bowel disease) and so because a lot of autoimmune and chronic illnesses overlap.

For me personally, I think the biggest issue was the fact of race. I'm going to be very candid about that. I had to fight like hell to get treatment. It was brutal. I was in and out of doctor's offices, ERs. No one would take me seriously. No one would listen. A lot of doctors thought I was drug seeking. A lot of doctors were very dismissive, even with the fact that I came in armed with information and say, hey, this is what's going on. And that was going on. I basically was not taken seriously.

Interviewer: You brought in labs that showed directly what was going on with your body and still you were not taken seriously?

Yeah, OK, so really funny. It's not funny. It's funny now, but back then when it happened, it wasn't funny. It was a time period where, when I was still undiagnosed, or we were leaning towards more of the rheumatoid arthritis diagnosis, and my gut was just on fire.

I was at work. I was doubled over in pain, running to the bathroom like crazy. I was like, listen, I have to go to the ER, sat down, was on the gurney waiting for the doctors to come. They finally came in. They did the whole pelvic check to make sure that everything was OK. Every time he hit the spot that was sore, I was like, oh, my God, what are you doing? Stop pressing it.

He left, but and he came back with his team, but they didn't come into the room right away. I overheard them in the hallway saying, hey, this guy's drug seeking. We're just going to recommend him to go back to his primary care physician. when they said that, I was just like, are you serious? What you're saying to me right now is that you're refusing treatment? I was like, well, there's nothing we can do. You have to go to your primary care physician and then they can take it from there. Fine, I don't want to cause a scene. I want to do anything like that.

Very, very, very, very, very fortunate that the following week I had a colonoscopy scheduled. I go in for the colonoscopy, all of a sudden, we get to a patch of about six to eight inches, totally inflamed. I mean, ulcers, bleeding, the whole nine. The doctor goes, that's the source of your problem. I'm like, oh, my God. I'm not insane? Because nobody believed me. Everybody thought that it was because I had a high stress job, that it was nerves or stress or whatever.

I decided to go back to the hospital because I wanted to say, hey, I want to show you that not every African-American male is freaking, I wanted to say another word, but and that I used very candid language because I was really upset, said, hey, I came here last week. You guys basically refused treatment. This was what was happening.

The look of horror that came over his face was just to this day, I still remember that look on his face because he was like, oh, we “f-ed” up. To this day, I joke with my wife about it a lot because I go back to that hospital. If for some strange reason, every time I step into the hospital, I'm immediately wisked into the back of the room. Cart blanche treatment, everything is great. I must have like a gold star next to my name or something.