The First Day of the Rest of my Life

After 656 days, 15 doctors, $15,000+, a ridiculous number of tests and so many tears, I finally have a partial explanation for what has been happening to my body all this time. I am no longer undiagnosed and I have the start of what is looking to be a long list of conditions.

I walked into the doctor’s office lost, confused, frustrated and almost at my wits end but I left with clarity, validation and hope for a new beginning. In just 30 short minutes, my long search finally paid off. A row of printed out results spread out over his desk, and the words “these tests were positive” changed my life forever.

I have Postural Orthostatic Tachycardia Syndrome, Myalgic Encephalomyelitis, Chronic Systemic Inflammation Disease and Small Intestine Bacterial Overgrowth. My doctor is still investigating for more and he has started me on a gentle treatment plan for a few of these as he doesn’t want to overload my body with medication all at once.

Just like that, my whole life and identity has changed. While I am still mostly undiagnosed still, I have some understanding as to why my body is the way it is and I really can’t tell you how this feels because I am still not sure. I know this news is incredible and I have waited so long for them but it just feels really surreal. It’s been such a build up to hearing these things, I don’t know how I expected to feel.

I guess I saw answers as my end game and never really thought much about life after a diagnosis. At the end of the day I am just as sick as I was before I knew what was wrong and nothing has really changed but at least I can stop wasting my energy on begging doctors to listen to me and start focusing on treating and managing these conditions as well as trying to get to the bottom of everything else.

I’ve been a mix bag of emotions since finding out; happy tears, sad tears, scared tears, relief tears – basically just a lot of tears in between periods of complete numbness. I know this is a great start and I am so thankful that I found a doctor who took me seriously and genuinely wanted to help me. I don’t know how much longer I could have coped with ignorant, dismissive doctors who thought I was either insane or didn’t care enough to look beyond the obvious.

I am struggling to reflect on this at the moment because it really is taking some time to sink in so I will keep you updated when I can.

This is the start of the rest of my life. The start of a new journey and the first step towards feeling as best as I can. I am so nervous but excited to turn over a new leaf in my journey and start my life as a diagnosed patient.

Please share your diagnosis stories with me: how you felt, how long it took to sink in etc.

And to all of you who are still searching, please don’t give up. It just takes one doctor to help you and you will find them one day. My heart will always go out to you and I will never forget how hard it was to float in medical limbo, lost and confused. I will always advocate and speak for you. I will never take my time undiagnosed for granted – it both destroyed and rebuilt me. Stay strong, you can get through this.

All my love,

Ash.

3 thoughts on “The First Day of the Rest of my Life

  1. Nyssa says:

    I was diagnosed with MS at 29. It took two years for the neurologist to diagnose me, when I had a second relapse and could fit the criteria. There was a part of me that felt like I’d finally arrived at something I could no longer outrun, but there was a dash of relief in the mainly numb feelings and desperate fears for my imagined future. It took 6 months to a year for me to get my head around it and sort my feelings out, about 1-2 years for me to not identify so closely with my diagnosis, for my acute awareness of my body to lessen.

    I would say that everyone who is diagnosed with something big is going to need to go through that path. It’s part healing, part coming to terms with what is, part finding ground under your feet again. It’s painful but it’s also what gives you more of your life back. Be kind to yourself through this, it’s a process. xx

    • abutler2295@gmail.com says:

      Thank you so much for sharing this with me. There are so many emotions at this time and you’ve explained the main ones so well.
      I really appreciate it.
      💗💗

  2. craftschronicillnessandadulting says:

    Thank you for sharing your journey. It definitely helps to know we aren’t alone out here in the land of ‘what the heck is happening to my body’. We share some diagnoses and honestly I’m sorry to be able to say that because I wouldn’t wish them on anyone. Wishing you a best as can be day.🌸

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