If you had to choose ONE element of your journey to change, what would it be, why, and what would you do to change it (can’t be “not having Cushing’s in the first place”!)

I have always been interested in the written word.

I was taught to read from a young age, and as a result, fell in love with words and the power they held. I could easily spend hours at the library and at one stage, was even banned from bringing any more library books home by my dad. He was convinced that I would ruin my eyes with all the time I spent reading- my head constantly stuck in a book.

He wasn’t very successful.

Even now, I regularly visit the library, and, quite fittingly, work in an Australian-run bookstore chain.

But in all my time spent reading, I never came across a rare disease like Cushing’s. In fact, I never read anything about it, and the name was unfamiliar to me. It wasn’t until I was properly diagnosed over two years ago that I started to wonder why this was the case. Okay, so I knew the disease was rare, but surely there should have been some literature available on the matter? Literature, I mean, that wasn’t confined to medical journals or short personal accounts on blogs and forums.

Why had I not seen books about this in the biography sections of my local library and bookstore?

Were people just not interested in publishing their stories?

Or were their stories so long and complex, they just didn’t have the time or inclination to write them?

I know if I had seen a personal account in book format, I would have jumped at the chance to read it. Reading the comments of other Cushing’s patients on forums told me that they too would have devoured anything similar, if only to compare their experiences with those of the author.

Which brings me to the above topic: If I had to choose one element of my journey to change, what would it be, why, and what would I do to change it?

The answer to me is simple. Recording. Journaling. Documenting.

Although I am a huge reader, I am not as consistent in keeping a record of the things that happen in my life. I don’t keep a journal and any entries in my diary are impersonal- I keep record of important dates and appointments, with the occasional reminder when something needs to be done urgently.

When I look back now, I really wish I had thought to write down my thoughts and feelings on each of the things that happened during my Cushing’s journey. I have recorded the dates of my tests, medication changes and surgery, but have not included any personal thoughts as to how I felt at the time.

I don’t even have a record of when my journey officially began. I could say it started with my local doctor, who referred me to an endocrinologist for thyroid testing, but this might not be correct. It may have started with the diagnosis of an abnormally high blood pressure for someone my age, but who knows?

If only I had recorded everything from the beginning- or as close to the beginning as possible. If only I had instilled in myself a diarist nature, I could have written a Cushing’s journey biography of the sort that I longed to read. Even as the idea crossed my mind, it was too late to do anything about it. Too much time had passed, and while some of the dates would have been relevant, my thoughts on what I went through would have been inaccurate. Poor memory is one of the symptoms of Cushing’s disease, and unfortunately, I had it. I couldn’t give an accurate description of my experiences if I didn’t remember them properly. Besides that, everything was so new to me at the time that a lot of the test records I did keep wouldn’t have passed muster for someone writing their biography. With a little bit of research, I could have probably found out what most of the tests were called, and what they revealed but I just didn’t have the energy or commitment. For me, inferior petrosal sinus sampling was simply the ‘groin test’.

Now, having experienced everything firsthand, I can fully understand why there are so few books available when it comes to patients living with Cushing’s. If anyone else has shared the same diagnosing experiences that I have, they will know that it is a grueling process, which takes a toll both physically and mentally. Unless you have been consistently keeping a record of your daily interactions, it is unlikely you will have a complete picture to present in biographical form.

Besides the written aspect of documenting, I have found that I don’t even have that many photographs of my journey. I felt so depressed about my weight gain and changed appearance that I refused to let people take photos of me during this time. My self-esteem was so low that I even had my husband edit one of our engagement party photos so that I would appear to have a thinner face.

In a world where selfies are the norm and people document every aspect of their lives, the journaling of my Cushing’s journey is painfully minimal. I was living (for want of a better word) on a day-to-day basis, and in hindsight, I wish I could have documented my experiences better.

Maybe then I could have written that biography that is as rare as the disease itself.

Catherine M., Victoria, Australia