So the big thing in my life right now that will be today’s topic of conversation…….Within the past 3 years, I was diagnosed with Fibromyalgia and Lupus. This took years for doctors to figure out, and it has been a struggle all the way through to get them to listen to me. Within the past few weeks, I have been diagnosed as possibly having Crohn’s or Ulcerative Colitis, and again, this has taken years for the doctors to catch on.
For those of you with a chronic, “invisible” illness (or two or three), I am sure you can relate to this statement: WHY DO DOCTORS NOT ACTUALLY LISTEN TO THEIR PATIENTS MORE OFTEN??? I had been trying for years to get a doctor to listen to me. I kept telling doctor after doctor that something was wrong, I didn’t feel right. I was in constant pain, I was not sleeping well, my intestines hated me no matter what I did, etc, etc. They would run their little tests, and tell me “There is nothing wrong with you, it’s all in your head, go exercise and lose some weight and you will feel better.”
Ummmm, really? That’s your professional medical opinion? I just paid $400 for you to tell me that it’s all in my head? I don’t think so!!!!
So then I would go to another doctor, and start all over again. This went on for a while, until finally, one day, out where we were living in Northwestern Colorado, in 2009 I found a doctor that actually cared enough to put aside what she thought she knew and was willing to listen to me!!!! Wow, I doctor that does not have their head stuck inside their rectum? What an amazing concept!
This incredible woman took the time to run test after test after test, until she finally found something wrong. She sent me to a Rheumatology Specialist, and BINGO! I have moderate/severe Fibromyagia and mild/moderate Lupus! I am not crazy (well, at least in this situation).
Words cannot describe the way I felt that day, the sense of vindication, the feeling of knowing that I WAS sick, it WASN’T all in my head, and there WAS a name for what was wrong.
Now more recently, trying to figure out why I have had these severe intestinal issues for the past 7 years has been a repeat of the same process. I will spare you the details of these issues, they make for quite the gag reflex in most people, especially ones who are eating. Let me just say that I was way, WAY beyond miserable with these symptoms, and I will leave it at that.
So here we go again, with doctor’s visits and specialist visits, and tests and procedures galore. And what was the result of all this? You guessed it, zip, zilch and nada. Not a darn thing! After a while, you get very tired of hearing “Well….we don’t really know what is wrong with you.” Oh great, not this again, seriously???
I am going to digress for a moment……By this time, it was the end of 2010, and we were in the process of moving back to Northern Wisconsin. My parents and my husband’s parents were there, and it was going to put us closer to other family as well.
Once we got back to Wisconsin, in 2011 I was finally able to get the breast reduction I had needed since the 5th grade. I had a really wonderful surgeon, very down to earth, and just an all around nice person. She was even surprised herself that by then end of the surgery, she had removed 6.4 pounds. That’s more than I weighed when I was born!!! I woke up after the surgery, and could see my feet for the first time in years, it was amazing! Recovery was a terribly slow process. As anyone with an auto immune disorder will tell you, trying to get your body to heal after major surgery can be a nightmare. After a terrible bout with a nasty infection on the left side, I finally healed up more than 5 months after my surgery.
So moving forward to this year, I had been working with my primary care physician, who was actually a Physician’s Assistant. She could not figure out what I was having such terrible intestinal issues either. She referred me to a Gastroenterologist that she used to work with in her younger years, and he and his team started trying to figure out what was going on.
Standard procedure seems to be to schedule an Endoscopy and Colonoscopy, so that’s what we did. I remember being in the recovery room after the procedure, the doc comes in, circles a picture from the procedure showing hemorrhaging in my ileum, and says “It looks like Crohn’s.” They do biopsies and the whole gamut of testing, and then come back and say “Nope, it’s not Crohn’s.” So more tests follow, and scans and ultrasounds and xrays, and I am getting to the point where my head is spinning and I don’t know which way is up.
The doctor schedules what seems to kind of be a “final followup.” He comes into the room, and admits that he doesn’t know what is going on, and he is going to put me on a prescription strength anti-diarrheal.
But wait a minute doc? What about those pictures of the hemorrhaging? You said that was a sign of Crohn’s? Why are those there? You can’t just give up now, I need to know why those are there?
Making a terribly long saga somewhat short, the doctor agrees to try me on 14 days of a “well tolerated” Crohn’s medication. And what happened? Yep, you guessed right, it’s working beautifully…..imagine that.
Maybe they need to teach doctors in medical school that you can run all the fancy expensive tests you want to, but sometimes when it looks, walks, and quacks like a duck, perhaps you should admit that it is a duck!!!!
So to close out this post, I would like to give the following piece of advice to all of my fellow “invisible chronic illness” brethren out there: When you are feeling ill and you know that something is wrong, just because a doctor tells you that nothing is wrong with you, it doesn’t mean that you have to believe it. You know your body better than anyone else on this planet. If your body is screaming at you, trying to tell you that you are sick, listen to it! There are plenty of us out there who from the outside look just fine, other than the dark circles and bags under our eyes from lack of sleep. But we know better, we know that something is wrong.
If you go to one doctor, and they tell you that nothing is wrong, then find another doctor! And if that doctor tells you the same thing, then find another one. Do not give up! At some point, and it may take years like it did for me, you will find someone that will listen to you, and dignify you by listening and trying to help you. Just remember, it’s an unavoidable fact and numerical statistic: just because someone graduated from medical school and has the letters MD after their name, they still could have graduated in the bottom half of their class!
You will get through this!!!! Hang in there!