Mistakes I Made In My Health Journey (And How You Can Do Better!)

It’s easy to blame my doctors for not giving me a proper diagnosis.

But it’s harder to examine myself to see how I contributed to the problem.

I’ve made some mistakes in my health journey. While I wish I could go back and change them, the best thing I can do is to keep moving forward and do better next time.

I am sharing my mistakes with you in hopes that you’ll avoid making these mistakes yourself.

Here are the mistakes I’ve made:

Not recording my symptoms
Sticking to dietary recommendations after it was obvious that they were not resulting in progress
Not demanding tests, when something was a possibility that I could’ve ruled out
Staying with a practitioner for more than six months if I wasn’t getting any results
Continuing to see medical professionals who gaslighted me
Not sharing my limits clearly with friends and family

But more importantly, I’ll share what I’m doing differently now.

The first thing I wish I would have started doing earlier is doing a better job of recording my symptoms.

Mistake: Not Recording My Symptoms

I’ve had chronic joint pain since I was a teenager. And when I went to see doctors I would tell them that this was my main complaint.

Whenever I would fill out the intake paperwork at a new patient appointment client I would only write the chronic joint pain and the symptoms section (with the year that each area started.)

I’ll always remember one appointment in which we were reviewing some blood test results. The doctor quizzically asked me if I had been experiencing other symptoms because my blood work was so off.

I had gotten hyper focused on my worst symptom and it prevented me from getting the right diagnosis.

I will always remember the first time I saw a functional medicine doctor who had three sheets with a bunch of different symptoms listed and I had to check off all of the symptoms I was currently experiencing and had previously experienced.

Because the chronic pain was so debilitating, I had ignored some of my less severe symptoms like:

Headaches
Digestive issues
Irregular cycles
Ear ringing
Heart palpitations

I can’t help but wonder…

If I had been a better complainer would I have gotten an accurate diagnosis sooner.

What I Do Now Instead: I Keep Written Records Of All My Symptoms With Ranked Severity To Share With Doctors

Now, I keep an ongoing list of all my symptoms with my medical records that I bring to all appointments.

The doctor I am working with now not only has me list my symptoms, but also has me rank them on a scale of 1 to 10.

Big one it’s helped doctors have a better root cause approach to see my whole symptom picture even though there are some things that just feel inconvenient, they are still significant.

If you’re dealing with any chronic health problems, I encourage you to keep an ongoing list of all:

Your symptoms – past and present even if they don’t inhibit your daily life (yet!)
The protocols you’ve tried – whether or not they’ve worked
The modalities – whether or not they gave you improvement

Keeping good records of your medical history and symptoms will help your current doctors move forward with you in the best possible way.

Mistake: Sticking To Dietary Recommendations After It Was Obvious That They Were Not Resulting In Progress

I’ve had digestive issues on and off since elementary school. I’ll spare you the details but it wasn’t pretty.

I always knew that sweet potatoes and beets made me really ill. But otherwise my digestive issues would come and go without any obvious pattern.

Over a decade ago, I got food sensitivity testing and it showed that I had over 50 food sensitivities.

So for six months I very diligently avoided all of the foods that I was sensitive to but I had no improvement in any of my symptoms, except my joint stiffness went away. However, I still had severe pain.

When I had my 6 month check in with the doctor, I asked her about trying to reintroduce some of the foods that seemed more benign like cucumbers.

She instructed me to keep avoiding all of those foods despite having minimal improvement.

But in my gut I knew I needed more variety in my diet because I was having really strong food cravings at the time.

What I Do Now Instead: Tell The Doctor That I’m Not Having The Improvements That We Expected And Ask About Other Possibilities

A few years later, another doctor lamented with me the faulty advice that I got.

She taught me how to reintroduce foods one at a time every three or four days and then record my symptoms to see if I was still reacting to them or not.

However, food related recommendations aren’t the only recommendation that may not be successful.

I have done dozens of rounds of physical therapy that was supposed to solve my joint pain. Some of the physical therapists just kept working me harder.

But I will always look back on one physical therapist fondly because he recognized that the exercises were not solving my problems and he referred me back to an orthopedist for more troubleshooting.

Whether it’s medication, physical therapy, exercises, or a supplement protocol, ask the doctor when they expect to see improvements and evaluate when that time comes if the recommendations have helped or not.

I like to ask this question at the first appointment so I have realistic expectations about their hypotheses. Remember, they are giving you their medical opinion. It could be wrong.

And if you haven’t seen any improvement, push to ask about other possibilities about what might be going on.

And if they push back on you, get a second opinion!

But hopefully, they will want to collaborate with you. And one of the first places to start is with further testing.

Mistake: Not Demanding Tests, When Something Was A Possibility That I Could’ve Ruled Out

It still makes my blood boil when I think back to an appointment where a doctor asked me if there was any chance I ever had mold exposure.

I naively said no.

And the doctor never suggested testing to see if I was excreting any mold toxins.

It wouldn’t be until over a decade later that I would finally have another doctor do the testing for mold and it confirmed I had multiple mold toxins inside me.

I wish when she asked me if I had more exposure that I asked if there were any tests that could confirm whether or not I had that.

What I Do Now Instead: Ask For Further Testing

If you have been struggling with any kind of debilitating mystery symptoms, it’s imperative that you demand testing for every possibility. When your immune system is haywire and doctors can’t discern what’s going on, your case may be an anomaly.

For example, joint pain isn’t usually the top symptom for someone with mold poisoning. But it was my main symptom for over a decade.

Furthermore, make sure that you ask about the possibility of false negatives and false positives in the testing. Sometimes blood and urine testing can be wrong. And your doctor may know the likelihood of that depending on what the test is.

Some conditions are very elusive and don’t show up well on tests.

These types of conditions may require a different kind of testing. Sometimes there isn’t an easy blood or urine test and you have to do some trial and error with medications, supplements, or diet. You might have to try a medication or supplement protocol to confirm your doctor’s hypothesis.

Remember that you are paying your doctor for their medical opinion. You have to reframe diagnosis as the current hypothesis and then test it out as if you are a scientific experiment.

Mistake: Staying With A Practitioner For More Than Six Months If I Wasn’t Getting Any Results

I’ve wasted a lot of money by staying with practitioners who had clearly run out of new ideas to try. I made the mistake of putting doctors on a pedestal instead of recognizing their fallible humanity and limited knowledge.

Other than that physical therapist who recognized that I wasn’t getting better with his exercises regime, I’ve only had one other doctor tell me bluntly that they had run out of ideas and that I had exhausted her expertise. I will always remember her humility because it was a catalyst for me to dive deep into my own medical research.

One thing I’ve learned about myself is that I am more likely to stay with a practitioner who is warm and who affirms my feelings, even if they’ve run out of ideas. Even if I like them as a person, I have to move on if I’m ever going to get results.

What I Do Now Instead: Move On

While it is tempting to bluntly ask a doctor if they have run out of ideas, it’s just not worth my time to stick with someone if I’m not seeing progress after six months.

Looking back, I’m grateful for the times that I have moved and it forced me to find new practitioners.

At this point, I’ll ask the doctors if they know of any more tests we might run or any other things to try. And if they tell me they want to give a current protocol more time or they beat around the bush and don’t really have any other ideas, I just won’t make the follow up appointment. I don’t want to insult them, and you can’t expect any person to have all the answers.

But sometimes a medical relationship should be cut short because of a doctor’s inappropriate behavior.

Mistake: Continuing To See Medical Professionals Who Gaslighted Me

You can read all about my experience with medical gaslighting and what you can do about it in this post.

In short, I will not tolerate any medical professional who:

Minimizes my symptoms
Doesn’t listen to my concerns
Denies test results or prescriptions
Or who just genuinely doesn’t feel like they are in my corner

If you feel like a patient doctor relationship isn’t helping you make forward progress in your health journey, find someone else to see.

I’ve learned that I must research doctors before I see them.

What I Do Now Instead: Researching New Doctors And Referrals Before Going Forward With Them

Whether I’m trying to find a new doctor on my own or I get a referral from another doctor, I always try to learn as much as I can about them.

I’ve had to learn the hard way that just because a doctor is friends with another doctor, sometimes they’ll give me a referral to a specialist and it might not be in my best interest.

Sometimes I learn about a doctor from a friend who is also a chronic illness warrior who’s had a good experience with them. Sometimes I find out about a doctor because I’ve heard them speak at a medical conference.

I’ll usually start with what they have on their website and how they describe themselves. I’m looking for someone who’s going to be a health detective. I read the reviews of other patients.

And if they look promising based on that, I will call the office and ask the front desk staff what their experience is with complex and chronically ill patients. I’ll ask about what types of tests they run and what services they have in house.

Even though I was really frustrated at the moment, looking back, I’m grateful that when a gastroenterologist office told me that they don’t treat patients with joint pain they told me everything I needed to know. The front desk told me in so many words that this particular doctor was not interested in looking at me as a whole person and didn’t care to try a root cause approach.

At times, I’ve called an office and said I have chronic pain and I’ve already done these 15 protocols. Do you offer anything beyond that?

Sometimes they’ll transfer me to one of the practitioners or one office gave me the doctor’s email to ask him myself. But if they just talk about symptom or pain management, it’s a yellow flag to me that they aren’t interested in helping me get to the bottom of my health problems.

I’ll always be thankful for one front desk staff person who gave me the number for a different office in town. She told me the practitioners there were better suited for my complex needs. So now, I’ll ask the front desk who they refer their toughest cases out to.

The last mistake I’ll share with you isn’t about doctors though.

Mistake: Not Sharing My Limits Clearly With Friends And Family

I have struggled with coming to terms with the fact that my health issues are chronic. For the first decade, I wanted to believe so badly that I just had injuries that weren’t healing right or that there was a quick fix.

And since I wasn’t being honest with myself, it was hard for me to be honest with others.

So I’d get invited to something and I’d push myself too hard. I would end up crashing afterwards and felt resentful afterwards. However, it was my own fault for not recognizing my limits.

Because I look healthy for my age, sometimes my friends forget all of the health problems that I’m dealing with. Even though I sometimes feel embarrassed at the time, I’ve had to get better about stating what my limits are ahead of time.

What I Do Now Instead: I Try To Share My Limits And Accommodations Ahead Of Time So No One Is Surprised Or Caught Off Guard

A few years ago a friend wanted to go to an aquarium to celebrate her birthday.

I knew I couldn’t handle walking around all day. I felt so honored that I was invited, but I had to say that in order for me to come I would need to use a wheelchair and that it would limit some of the places we would be able to go together.

I was so anxious to share my limits.

But she was happy to work around that and because I told her the accommodations I needed in advance so that I was able to enjoy myself.

I struggle the most with saying my limits when I genuinely want to help someone.

One volunteer opportunity that I have found really fulfilling is being a buddy for international students at the local university. I meet with them about once a month and I usually take them places where the bus routes don’t go so they get to see more of our area. But at the end of this semester one of my students was going to her home country for the summer and she asked me if I could help her take that belonging she’s going to leave here in the states to her storage locker.

Of course I want to help her. But she didn’t know about my health issues. I had to let her know that I was happy to drive her and her stuff but I wouldn’t be able to carry anything because of my health. I just feel so awkward admitting these things because I’ve been accused of being selfish or lazy when I haven’t offered to help in these kinds of situations.

But she was still so grateful that I drove her.

Moving On From Mistakes

Hindsight is 2020, isn’t it? While we can’t go back and change the past, we can change our future.

Now that I’ve been making these changes, I’ve made a lot more progress in my health journey and overcome some of the plateaus that I hit.

What mistakes have you made in your health journey? What are you doing differently now? I’d love to hear from you in the comments below.

Pastor SJ

Navigating Chronic Illness With Hacks + Hope