The impact of diagnosis.


It’s something that we hardly ever talk about. Maybe because it was such an impactful event in our lives, it did change our lives forever.


I can still remember the very day I got the news. It was a phone call from the endocrinologist’s office. It was a woman’s voice. The tests confirmed what my GP had suspected. I had diabetes.


‘You need to come in for further tests.’ She said. And that was it. I was alone in my dorm room at university.


I called my mum. She cried. She knew exactly what I was going through and would have to go through. She has diabetes herself.


I realize now I had a pretty good idea about what ‘being diabetic’ entailed. I had never known differently than my mum having to inject herself and check her blood sugars with a finger prick. However many people have absolutely no idea what they (or their families) are in for.


Looking back, that phone call looks very harsh.

No ‘’ I’m sorry to inform you.’’

No, ‘’ Do you have any questions?’’

No, ‘’ You can reach us on this number for any support.’’


Just a bland statement. The tests confirmed you have diabetes.


Even after going in for further testing I didn’t receive much further support. The doctors were looking for the cause of my diabetes because by now it was clear it wasn’t type 1. They would check for carcinoma. ?! And send me on my way.


That was the most difficult month of my life. I had to wait two weeks to get an MRI of my pancreas to check for pancreatic cancer. And then I had to wait another two weeks for the results.


What about my mental state at that time? It seemed not relevant to them.

In just a couple of weeks my life had changed completely. I was living with a chronic condition and might even have cancer. Yet not one person at the hospital asked me about how I was feeling and if I needed to talk to someone.

I didn’t at the time realize myself how much of malpractice this actually was. Nowadays I know better.


The recent problems with my kidneys have had a big impact on my mental health too. I need to figure out what’s wrong with my body AND need to take care of my mind and wellbeing.


After I finally received the diagnosis MODY 1 and was put on oral medications I did have a talk with a dietician. She summed up all the foods I needed to avoid. Reminded me of the possible consequences of elevated blood sugars and send me on my way.


I vividly remember the first time I went grocery shopping after that. It felt like I couldn’t buy a single product in the store! I must have walked around for hours; picking my regular product from the shelves, reading the label and putting it back.


On a bright note, I did learn a lot about food, food labels, nutrition etc. in the 8 years since diagnosis. I have developed a love for cooking, nutrition science and moving my body to take good care of myself.

It hasn’t been an uneventful ride. But I am grateful to be where I am now.


The only thing I ask is for the health care system to see people with chronic illnesses as people. The day you tell someone his or her life will change forever is like an earthquake. Earth plates shift for that person. The impact is unbelievable. Not only physically. Not only in how they have to live their lives. But also mentally. At this point, the latter receives too little attention and care.


I hope by engaging in the online community and writing these blog posts, the newly diagnosed of today don’t have to feel alone. That they can reach out and find support from us, who know exactly what has happened to them. I’ve said it before, community is gold. And I’ll forever be grateful.


Love you all;

Please reach out if you need to. I am here.

Jessie



My 20th birthday. Last B-day before diagnosis.