Struggling to Keep Searching for a Diagnosis When Every Appointment Is Disappointing

Going to the doctor is easy; you call and make an appointment, you turn up and discuss your symptoms and then your doctor presents you with an answer and a solution. However, this is not the case for people like me, people with rare and chronic conditions that are difficult to diagnose. Did we realize this the first few times we went to the doctors seeking answers? Of course not. We all walked into that office expecting to walk out with answers and treatment.

For me, it took four appointments to realize this was going to be a long fight to find answers. Four appointments where I was left feeling like a fraud because my results were negative and I was made to feel ridiculous for actually wanting them to be positive. Nobody actually wants to be sick, but when you are sick, you want answers to explain and validate your sickness. When you are undiagnosed, doctor appointments are a difficult and daunting thing that we often put off for weeks or months. I spent the first six months of this year procrastinating my appointments, but I didn’t realize why.

 

The first few months of my illness in late 2016, I spent so much of my time and energy visiting doctors and taking a ton of tests including an MRI and lumbar puncture. The wave of emotions I went through when all these tests showed nothing is something I really struggled with. This is explained further in The Bad Good News. None of the many doctors I saw in the beginning tried explaining to me that sometimes certain things take longer to diagnose. None of them validated my experiences, and all of them made me feel like I was wasting their time. After the first wave of disappointing appointments, I was left feeling lost and unmotivated. It was because of these feelings that it took me half a year to reorganize myself and start seeking answers again.

I began to feel anxious when it came to even booking appointments because I was so worried I’d be left feeling like I did that first time. I would leave it weeks, sometimes longer to book in simple blood tests and chase up certain specialists because I didn’t want to be disappointed. I felt like I was wasting my time, energy and money seeing doctor after doctor and getting no answers.

I am thankful for our healthcare system in Australia because I know it is worse elsewhere, but I have still spent so much money on doctors and tests in the last 10 months that it feels ridiculous. I gamble sometimes up to $600 on appointments that I know most likely will lead nowhere!

Sometimes I procrastinate my appointments because I don’t want to waste money I don’t have. There are some tests I can’t take because they cost upwards of $1000 and when you’re too sick to work, this is just not feasible. When it comes to your health, money shouldn’t be a concern but in reality, it is a major concern for most people. The Body vs Bank Account Debate talks more about this issue. I once asked myself the question, if it wasn’t for the money, would I be further along in my journey to finding answers? There was a time when I would have said yes, but now I am not so sure. Because of all the negative feelings I have built up associated with doctors, I think I would still struggle to be motivated to seek answers. Sometimes it feels like my seeking answers is more like seeking disappointment. While money is an important contributor to my procrastinating appointments, it’s definitely not the only thing.

In a way, I felt silly for sitting back and letting so much time pass between appointments and I was embarrassed when people asked how my progress was going and how my appointments were because I did not have any for quite a while. It was hard to explain to others and even myself why I wasn’t following up on these things. It just felt like I was stuck, getting nowhere, and to be honest I couldn’t handle the constant emotional roller coaster that came with these appointments. When there is no hope, there is no motivation and part of me had lost hope I’d ever be able to explain what’s wrong with me.

I do not regret spending this time avoiding appointments because I have used this time to adapt to my new abilities and my new “normal.” I have built up the mental strength and resilience I need to face new and old doctors and handle disappointing news. I am now confident I can go to my next lot of appointments with a better understanding of my condition and a more open attitude to different treatments and tests.

This post originally appeared on Finding Rainbows in the Dark.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via idmanjoe.