When Seeking A Diagnosis Feels Like Seeking Disapointment

Going to the doctors 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 realise 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 realise that 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 feel crazy for actually wanting them to be positive. No body actually wants to be sick, but when you are sick, you want answers to explain and validate your sickness. When you are undiagnosed, doctors 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 realise 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 tonne 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 reorganise 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 how much worse it is 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 that I don’t have. There are some tests that 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 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 where I would have said yes but now I am not so sure. Because of all the negative feelings that 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 that 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 that I need to face new and old doctors and handle disappointing news. I am now confident that 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.

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9 thoughts on “When Seeking A Diagnosis Feels Like Seeking Disapointment

  1. Elsie LMC says:

    I love reading your posts because they are so so relatable. Every hospital appointment/scan ends in disappointment and I’m left feeling like I will be this way forever and that I’m dragging people down with me by not being well. I can’t even remember how I used to act before I started getting sick when I was 10/11 (now im 18) I’m told I used to be more jokey and it scares me so much that this pain/constant disappointment is changing me 🙁 I agree that it’s hard to explain to people without feeling like a crazy Person why I go to the hospital so much. Also when I get easily tired I go quiet and some people think I’m not talking because I’m annoyed with them but I’m hurting so much 🙁💗💗

    Liked by 2 people

    • FindingRainbowsintheDark says:

      Thank you SO much for always being so kind and supportive- I also love reading your posts for the same reasons! I can’t believe you have been unwell for so long 😓. We’d be silly to think something like this won’t change us – we just have to let it change us for the better! Sending you love 💖💖

      Liked by 1 person

  2. ckmccowan says:

    Hi Ashley,

    Not sure if you remember me, but we connected through a Facebook blogging group a couple weeks ago (or so). I subscribe to get emailed when you post new content and noticed that you have it set up to send your subscribers the entire post. I just wanted to make sure you are aware of that. I recently found out that I did that, too, but changed it because I want my followers to go directly to my website to read my newest posts. That way I get more visits, clicks and views to my site.

    I think WordPress has it auto set to send the entire post so if you want to change it, you have to go into your settings and change it.

    Anyway, keep up with your great content work!

    Xoxo,

    Colleen

    >

    Like

      • ckmccowan says:

        You are welcome! I’d never reblogged another post before and I’m not even sure where it posted to! I thought it’d go to my site but I haven’t seen it. Maybe it posted to WordPress reader? After re blogging your post I looked into adding that feature to my blog and couldn’t find it. :-/ Will keep looking 🙂 Take care sweetie!
        Colleen

        Like

  3. craftschronicillnessandadulting says:

    This is so relatable, now. I’ve been trying to see a new rheumatologist since March! Long story but between them referring me out to Drs that don’t see my illness and my now fear of dealing with it it’s taking forever! This is definitely something that one couldn’t understand unless they’d been there first hand. I’m sorry you have to go through this too.🌸

    Liked by 1 person

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