Finding out you have an incurable, chronic condition is traumatic. You enter unknown, unsafe territory, and have to live this every day for the rest of your life.
My diagnosis story is a long one, but don’t worry, I’ll try to keep it short. I was always a ‘sickly child’, missing school regularly with recurring illness. It was not unusual for me to be unwell, but I would at least always get better. However, in 2015 during my first year of university, I came down hard with a chest infection which turned into pneumonia.
An expensive misdiagnosis
After two courses of MRSA-killing antibiotics, I was finally on the mend, or so I thought. From 2015-2018, I was at the hospital more than I was at work, having countless blood tests, referrals, CT scans, MRI scans, an endoscopy, a camera up my nose. Misdiagnosis of skin cancer, a brain tumour, Addison’s disease, Crohn’s disease, dairy intolerances, all of this was put on my shoulders and it was a lot to carry. Everything was coming back inconclusive/normal, no matter what, nothing was showing up.
There was so much worry and stress of the tests and procedures, and guilt for needing so much time off work, it started to take a toll on my mental health. The last straw was when I went to my family doctor, who I had known since birth. I told him my symptoms, which he told me were just simply “a sensation in my head. It is all in your head”. Naturally, I felt crushed; I knew there was something wrong, my body was not well, yet a doctor who has known me for my entire life just told me everything I’m feeling is all in my head… It was so confusing and made me doubt myself, was I going mad? Had I become a hypochondriac? Even my family had started to tell me that maybe I should just accept things as they are and move on with my life. So I did, for another 6 months or so, and that’s when I got really sick.
In March 2019, I had the best time of my life on a trip to Dublin with my fiance, and on my return, I found out that my grandad, who was my hero, had terminal lung cancer. Several days after, I noticed major fatigue, thirst, and weight loss, to go with a painful rash that I had had on my chest and face for some weeks prior. Not wanting to cause a fuss due to my family still processing the news of my grandad, I ignored it and carried on. I went to London the last week of March to work on a film, and spent most of the shoot lying on a couch unable to move, feeling like my body was shutting down, I just remember drinking everything I could, including incredibly sugary coffees. The day after I got back, I dragged myself to work, and my walk home took me 2 and a half hours, rather than my normal 30 minutes. My boss took me to one side and was concerned because he felt I was slacking. My partner knew something was wrong, and I started to panic; my dad is type one, and was diagnosed at 15, hours from falling into a coma while in DKA. I’ve been brought up to recognise the warning signs, and my dad would test mine and my brother’s blood sugars every week.
2019 was a tough year for me and my parents, and so I didn’t go to my dad to have my bloods checked. Of course it would be the one period of time my blood sugars weren’t checked, I actually had type one diabetes. However, on April 3rd I blacked out, and when I came round I knew I needed my dad to test my blood sugar. It was 22mmol/L. My dad turned grey, and started to cry; his worst nightmare had come true in front of his eyes. He told me we needed to go to the GP first thing in the morning; it was around 2AM when my levels were checked.
My diabetes diagnosis
Going to the doctors a few hours later, my urine was tested and it was completely full of sugar and ketones. I was told to go home, drink water and a diabetes nurse would call me within 2 hours. We had been home for 15 minutes and my phone started ringing, it was the hospital saying I needed to go straightaway, no delay. We arrived at ACU (Ambulatory Care) and I was seen by various doctors and nurses, had my blood taken several times so my arms were bruised black. Then a diabetes nurse came into the room with a huge bag full of all my new supplies, and I had my first shot of insulin. I was in DKA, and told if I had left it 2 more days, I’d have died. That completely messed with my head, and still does now.
I was told I could go home the same day, “because dad is type one” and was on strict bed rest and not allowed to be left unsupervised due to how my body was reacting. That was that. I came home with a whole new life, an entire box filled with supplies, and just left to it.
I remember writing in my journal a few days later that everything would be fine. Reader, everything was not fine. I had mental health issues before my diagnosis, but being diagnosed and how that made me feel, along with how the condition itself makes you feel, just completely sent me in a downward spiral moving 100mph. My dad has never really spoken about his diabetes and how it makes him feel, and so I was not expecting any of what I started to go through.
My diabetes diagnosis (and subsequent other autoimmune conditions that have developed in the last 2 years) has completely changed me as a person, it’s knocked my confidence and I am grieving for the life I had before. Being diagnosed as an adult, when you have already established your routine, it feels incredibly restricting. The mental toll that type one diabetes has on the brain is so intense, but equally, while I am still trying to come to terms with it, while dealing with the medical trauma I endured over the few years before diagnosis.
Autoimmune diseases can take 5+ years to diagnose, and the autoantibodies for type one diabetes can be present in the body for up to 10 years before clinical symptoms start to show. It baffles me that not a single doctor thought to check for these, given that my dad is type one. When I eventually had my blood test for autoantibodies, my levels were over 2000 which is apparently incredibly high. I can’t help but feel frustrated that this test was not done sooner, as I have complications now that have arisen due to being undiagnosed for so long. Also being told that everything was in my head; I still have days that are crippled with denial thinking I can’t really be sick.
Dealing with diabetes
Dealing with diagnosis for many is not easy at all, and there are ways that can help, but in all honesty I feel time has been my main one. I’ve just noticed over time that my anger is slightly less, and reaching out to other people living with diabetes has helped me tremendously. Additionally, speaking out about it on social media has helped, educating people who do not have diabetes and informing people of the misconceptions. It has definitely been a form of therapy for me which I am so grateful for. I got two tattoos on my arm as a response to my diagnosis, one of which my partner designed for me. It was a really cathartic experience which has helped me process it a bit more. Over lockdown, I started to embrace it even more, and ‘decorate’ my diabetes. Buying cute stickers, a Myabetic bag to put my kit in. All these small things have helped me process diabetes as something that is a part of my life. For much of these first two years, I have felt completely lost and defined by my illnesses, but now, gradually I am starting to find myself again which is very comforting and exciting.
My main takeaway from this, is talking about it helps more than you think it would, and to not be afraid to push for the support you deserve. It is a very isolating situation to be in, but as I have found, having the right support network, makes a huge difference.