This is such a hard topic for me, and yes, I’m still angry about it. It took me over 20 years to get diagnosed with Crohn’s Disease and then later Ankylosing Spondylitis. There was a lot of suffering and debilitation in-between. Autoimmune diseases are common (although certain ones can be rare) and it should not have taken so long to receive treatment.
I’m just going to say first off that if you think that you might have an autoimmune disease you need to ask that your doctor give you a blood test testing for:
- C Reactive Protein
- Red Blood Cell Sedimentation rates
- ANA
- Thyroid
- HLA B27
During those 20 years, doctors would try to appease me by giving me blood tests but they were in no way testing for autoimmune disease, just common things like how my calcium levels were. If someone would have just done the C Reactive Protein test, they would have seen something was terribly wrong from the get go and saved me decades of suffering. If they refuse to give you the blood test, tell them you want it documented in your chart that you asked for a blood test and they wouldn’t give it to you. I’ve also worked in health insurance and can tell you that no insurance company is going to pay someone to review authorization for something as low cost as a blood test. Typically these things are “pre-authorized”. So I would be very skeptical of a doctor saying your health insurance might not pay for a blood test. Honestly I would have happily paid out of pocket if I had to.
It might sound like I’m adversarial towards doctors. I have an excellent set of doctors now and have since getting diagnosed. But for the primary care doctors that acted as the gate keepers preventing me from getting treatment, yes, I am very angry.
Starting at age 14 I was having severe gastrointestinal distress that I now understand to be Crohn’s Disease. You can imagine what it must have been like to have Crohn’s disease in High School where every teacher says “No one’s allowed to use the bathroom in my class!” I would just sit there doubled over in pain the entire day. When I went in for my yearly check-up my doctor declared me lactose intolerant. I was never given a lactose intolerant test or anything. It was simply declared to be so.
By the time I was in College I was developing a voice as well as the ability to articulate my needs. I wasn’t buying the lactose intolerance thing because despite being completely dairy-free for years, the symptoms never stopped. By 2006 I realized I had an autoimmune disease and asked my doctor to test me. She refused to do so, saying I was just stressed.
One of the reactions that people have to hearing stories like this is that they assume the person must be “a poor self-advocate”. They assume that you must have been rude, demanding, or hysterical. I can only wish that there had been video footage of all the times I brought my concerns to a doctor in order to prove that this was not the case. In fact, I can only assume that it must be doctor protocol to tell a patient to work on their stress levels unless the symptoms are something that can be visually seen by a doctor such as a spine that is out of alignment or a weeping wound.
I did a little researching and found that doctors believe that between 70 and 90 percent of primary care visits are due to mental health issues. If doctors believe this, they are going to look at your complaints of pain, headaches, fatigue and brain fog and say “Yep, here’s another one”. Another issue I believe is that they see so many patients that they don’t remember. They also don’t look at your chart. Every time you come in, it gets treated as if it’s the first time you are complaining about this issue. If they do recognize that you’ve come in multiple times then you get placed in the “really crazy” category.
By 2016 I started to be a little more forceful but was still repeatedly told I needed to work on my stress levels and sent on my way. At this time I was so sick I was having difficulty getting through the work day. My hair was falling out. My pain was so bad I was to my shock considering buying hard drugs on the street. I never did but I understood then why some people make that choice to have a drug addiction. I actually found a statistic online that it is believed that 86% of substance users have their addiction due to untreated pain disorders. Really what kept me off the drugs was that I knew if turned to drugs then there would never be any hope of ever getting a doctor to treat me. Everything would just be “she’s an addict” and I would never get diagnosed. Never ever.
By 2018 I was pooping out blood and my own stomach lining. My husband actually had a coworker who died of Crohn’s this way. One day he just bled-out internally at work. I thought “Surely now a doctor will take me seriously!” The doctor said “Oh, it’s probably just ulcers” and sent me on my way. I was never given an ulcer test or any treatment for these supposed ulcers. I came back and was told “Oh it’s probably just bleeding hemorrhoids”. Again, no one ever checked me for hemorrhoids or offered any treatment. When I came back a third time and told the doctor I felt dizzy from the blood loss she wrote me a referral to see a psychiatrist.
I actually did end up seeing the psychiatrist, because what else could I do at that point? I told the psychiatrist what was going on and she said “Oh my God it sounds like you have Crohn’s disease! You need to go back to them and tell them that I told you that you need to be tested for Crohn’s disease!” This time they did the blood tests I listed at the beginning of the article and finally wrote me a referral for a Gastroenterologist.
The waitlist to see the gastroenterologist was something like 6 months. I ended up in the hospital before that. I was in the hospital for a week in 2019 and during that time the doctors were considering doing surgery because my Crohn’s was so bad. Shortly after that I was also diagnosed with Ankylosing Spondylitis.
It’s both amazing and shocking to me that it had to get that bad for me to finally be diagnosed with something that isn’t even a rare disease. I know people reading this are thinking “You must have been the problem! You must have acted crazy in your doctor’s office! There’s no way something like this would have happened otherwise!” I can assure you that I was polite, professional, even submissive in manner. Maybe that was the problem. Maybe if I was truly freaking out and exploding with anger I would have been rushed to treatment. Maybe that’s why we see people acting that way.
If I were to go back in time, the only thing I would do differently is to demand that I be given those blood tests years earlier. The problem is that I had no way of knowing about those blood tests because that information is not available on the internet. There was no way for a non-doctor to know about it.
I wrote this article because I’m hoping it will help someone. If it took you forever to get diagnosed or if you’re in the place now that I was in 2018, you’re not alone. If this can happen to me, it can happen to anyone. I know for a fact that you can be sweet as pie and “do everything right” and still be mistreated by a series of doctors. My health insurance actually became angry about what happened and opened an investigation against the health center I was going to. Conveniently nothing was recorded in my chart. All those years of appointments were apparently just me coming in for no reason.
Doctors are under a lot of pressure. Doctors are burnt-out. Doctors commit suicide at a rate higher than any other profession. If they can get you out of their office quickly they will.
I really don’t want to sound like I hate doctors or don’t appreciate them. They work very long hours and had to sacrifice the best years of their life in medical school. They also have to deal with the general public which is a very difficult thing to do. If not for doctors, I wouldn’t be in remission right now. Clearly the problem is that the corporatization of medicine is hurting everyone, doctor and patient alike. All I know is that my experience shouldn’t have happened. I was mistreated. I was condescended to. I was humiliated. I was so desperate I found myself seriously considering picking up a drug habit. I honestly believe that if I hadn’t gone to the hospital that day I would have died. This is a very sad state of affairs.
If you resonated with my story at all, all I can say is don’t give up. Now that I have treatment, for the first time since I was 14 I know what it feels like to feel reasonably healthy. My hair is growing back. I feel good! There is a light at the end of the tunnel!
