“I feel that your symptoms are largely anxiety-driven.”



That was what my gastroenterologist told me in July, after a normal colonoscopy and upper endoscopy. I was sitting at home when I received her message through the online portal. I had messaged her asking for our next step in looking for a diagnosis. My digestive tract looked normal, but I was still in so much pain.



First, let me say that I understand and have felt how physical anxiety can be at times. When my anxiety is uncontrolled, it tightens my throat until I feel like I’m suffocating. Getting help for my anxiety and depression gave me a quality of life I’d never known before. Depression and anxiety can also be symptoms of EDS. I highly recommend talking to your doctor or a counselor if you’re struggling.



Because I have years of experience in managing my anxiety effectively, I know when it is out of control. I felt I had a very reasonable level of anxiety, particularly given my medical circumstances. I was sick and feeling very discouraged and upset.



My experience is not an uncommon one in the EDS community. Websites sell EDS shirts that say, “It’s not in my head, it’s in my collagen!” We are used to being told we’re stressed, anxious, just getting older, attention-seeking, or hypochondriacs.



This stems, in my opinion, from a lack of awareness of EDS and also the bald fact that stress and anxiety are much more common causes of chronic pain, IBS-type symptoms, fatigue, and many of the symptoms that are common in us EDSers. Your doctor (probably) isn’t being negligent; they’re just looking for a horse instead of a zebra.



So how do you convince your doctor to keep looking when they’re certain you’re just anxious or stressed?



There’s no one right answer for this. I am not advocating for doctors to perform expensive, invasive tests on patients when they believe there will be zero benefit to the patient. That would be unethical. You and your doctor need to agree that there is benefit in doing further testing or research.



There are several components to a successful approach.



Remember that you are the expert on you.

As an undergraduate researcher, my faculty advisor gave me some solid advice before a presentation. He said, “Amy, you’re the expert on [obscure moth species] in the room. It’s unlikely anyone else will know much about them, so don’t be so nervous about making a mistake. They probably won’t notice if you do.”



It’s true that I was the expert on that moth species in that conference room, even though I was 20 and terrified. Likewise, in the doctor’s office, you are the expert on you. Your doctor knows a lot about anatomy and physiology, but they can’t tell you your personal history, how you’re feeling, what you’re experiencing, etc.



Though I told my gastroenterologist I wasn’t feeling all that anxious, she stuck with her opinion that my problem was anxiety. She can’t decide how I feel though. I’m the expert on me.



Keep your cool.

When I got that message from my doctor, I was furious. I felt like she had not heard a single word I had told her. That made me feel disrespected and marginalized.



I made the decision to switch doctors (more on that later), but that is not always possible. Had I stuck with this doctor, I probably would have said something snippy and demanding, in an attempt to push her to keep looking.



That would have been the wrong move. By responding in an emotional, rather than logical, way, I would risk reinforcing her view that my out of control mental state is the cause of my condition.



I also remind myself that my doctor is human and humans make mistakes. My husband always reminds me that most people are good people with good intentions. I shouldn’t assume that if my doctor doesn’t want to investigate further, it is because they don’t care. They have to follow their own judgment and in all likelihood, they’re doing their best.

Do your homework.

At my first rheumatology appointment, my doctor diagnosed me with benign joint hypermobility syndrome. We also ran a wide range of blood tests to look for autoimmune disorders. At my second rheumatology appointment, I arrived, hypermobile EDS diagnostic checklist in hand (along with my appointment sheet) and having read everything that I could about EDS.



It was my opinion walking into the appointment that I fit the criteria, but I also wanted to see what conclusion my doctor would draw on her own. We went through the checklist together and I got my preliminary diagnosis of hEDS (which was later confirmed with a geneticist).



Had I not done my research and brought the checklist along, I think that second appointment would have gone very differently. We would have discussed all of my negative autoimmune blood tests and I may have left feeling frustrated about another potential dead end.



It’s important that you learn as much as you can about your symptoms and any conditions that you are specifically worried about. Take notes. Save informative articles.



Don’t be afraid to bring in journal articles to show your doctor. I would recommend against bringing anything anecdotal, like forum posts. The information on forums or social media isn’t reliable. Journal articles are peer-reviewed, evidence-based science, and your doctor is more likely to respond to that.



Reputable websites like those of the Ehlers-Danlos Society or the Mayo Clinic would also be solid resources to bring in. The key is to bring information from proven experts.



It’s not realistic to expect your doctor to read the article at the appointment. I would highlight key points and encourage the doctor to keep the copy. Worst case scenario, having the article present and highlighted can help you present the best argument for further investigation.

Ask specifically about symptoms that you think cannot be related to stress or anxiety.

This section was added based on a suggestion from a reader in the Ehlers-Danlos subreddit, but it is definitely a strategy I have used in the past. By bringing up a symptom that you think is can’t be caused by stress or anxiety, hopefully you will introduce enough doubt in the doctor that they will be willing to keep looking.

In the case of my gastroenterologist, I could have asked whether anxiety would cause blood in my stool in the absence of hemorrhoids. To my knowledge, the answer to that question is no. (I could very well be wrong, but I didn’t find anything online suggesting it could be.)

There are several ways they may respond. They may tell you that it could be caused by stress or anxiety. Always ask how. It’s a great learning opportunity and you can get an idea as to how they’ve reached their conclusion.

They may tell you that it can’t be caused by stress or anxiety. Sometimes, that one symptom may not be enough for them to feel further investigation is necessary at that time. Hopefully, though, they will reconsider and decide to explore further options.

They may also refer you to another doctor if the symptom isn’t within their specialty. The new doctor may better be able to help with that symptom. This can be frustrating when you feel all of your symptoms share a common origin, but in my experience, it is beneficial to see the new specialist and get their opinion as well. It can be an opportunity to explore further without needing to press your current doctor.

Be willing to be wrong.

It’s difficult to think about, but your doctor may be right. Your problems may be due to stress or anxiety.



Your goal shouldn’t be to see doctor after doctor until you get the answer you think you should hear. Your goal should be to get accurate answers and get the best treatment possible.



In the end, if your doctor listens to (and actually hears) your concerns, it may not change their opinion. You then have a couple options. You can accept that and try to follow their recommendations to improve your symptoms. If your symptoms improve, excellent! If you still don’t see an improvement, hopefully your doctor will be on board with further testing and treatment.



You can also choose to see a different doctor. When I stood at this crossroad, I put quite a lot of thought into how I felt and whether I thought there was any way my doctor was right about my anxiety. For me, that answer was no. Anxiety doesn’t cause many of my symptoms that are less subjective than abdominal pain, like rapid vision changes. I needed to pursue a diagnosis with a different doctor.



Honestly, I was a bit tempted to take the easier road and listen to that doctor. I would have been done with my exhausting search for answers, at least for a while. This whole process is incredibly draining and I have wanted to give up so many times. Leaning on my husband has given me the strength to get through those darker moments.



Remember that trust is a key part of your relationship with your doctor.

There have been many times in my life where I felt like a doctor was dismissive or disinterested in what I was telling them. This can be painful, particularly when it comes from a long-time doctor or one with whom you have had a positive experience with previously.

When this happens, I think about trust. I need to feel confident that they have my best interest at heart and are invested in my health. If I feel that my negative experience with the doctor will make me unable to trust their advice in the future, I make the decision to switch to a new doctor.

Trust is also a two-way street. If you withhold information from your doctor or lie to them, they will lose that trust in you. That makes it extremely difficult for them to care for you. Always, always be open and honest with your doctor, even when it’s embarrassing or awkward.

Final Thoughts

It’s important to me that this post is not taken to mean, “Don’t listen to your doctor!” I have a great team of doctors now and we are all working together to find treatments for my conditions. It is so important that you listen to your doctor, just as its important that your doctor listens to you.



This post is meant for situations when you and your doctor are not on the same page. For whatever reason, you aren’t seeing eye to eye about what is causing your symptoms. My hope is that it will help you take these disappointments, dust yourself off, and continue on your search.

I’ll end with a quote from psychiatrist, author, and holocaust survivor Viktor Frankl.

“The last of human freedoms is one’s ability to choose one’s attitude in a given set of circumstances.” – Viktor Franlk

Originally Posted: 10-5-18

Last Updated: 10-16-18