‘Just accept things and move on.’ Was I going mad? Everything came back ‘normal.’: Woman details Type 1 diabetes diagnosis, ‘I can recognize myself again’

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“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.

I was always a ‘sickly child,’ missing school regularly with recurring illnesses. 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.

After two courses of MRSA-killing antibiotics, I was finally on the mend, or so I thought. From 2015 to 2018, I was at the hospital more than I was at work, having countless blood tests, referrals, CT scans, MRI scans, an endoscopy, and a camera up my nose. Misdiagnosis of skin cancer, a brain tumor, 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.

Courtesy of Charlie Granby

There was so much worry, stress from 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 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 fiancé, and on my return, I found out 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 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 a type one diabetic and was diagnosed at 15, hours from falling into a coma while in DKA. I’ve been brought up to recognize the warning signs, and my dad would test mine and my brother’s blood sugars regularly.

Courtesy of Charlie Granby

However, on April 3, I blacked out and when I came round, I knew I needed my dad to test my blood sugar. 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 when my phone started ringing. It was the hospital saying I needed to go straight away, no delay. We arrived, and I was seen by various doctors and nurses and 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 remember writing in my journal a few days later everything would be 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 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, feels incredibly restricting. The mental toll type one diabetes/chronic illness 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 not a single doctor thought to check for these, given 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 this test was not done sooner, as I have complications now that have arisen due to being undiagnosed for so long. Also being told everything was in my head, I still have days that are crippled with denial, thinking I can’t really be sick. The illness I had in 2015 is what supposedly triggered the dormant autoimmune response.

In the weeks following my diagnosis with type 1 diabetes, I found myself falling deeper into a pit of despair, completely overwhelmed this was life now, having to deal with so much daily. The strain on the brain is intense and I had no support at all. I have always been aware of the fragility of life, but I think it is human nature to think, ‘It won’t happen to me.’ It is a defense mechanism. But now, my life suddenly became this incredibly fragile flower that was in my hands. You are thrown into fighting to stay alive all day every day. It is not natural and it has a huge impact.

Courtesy of Charlie Granby

I remember that first week post-diagnosis. I was too afraid to sleep, too afraid to eat, even too afraid to inject insulin in case they had got it wrong and I actually was not diabetic. This huge fear of absolutely everything washed over me, but the hospital just sent me home because my dad also has type one diabetes. To this day, I am still dealing with this. I go through phases where eating, sleeping, even walking outside, is a big issue and a fear, because I am worried about what my body will do.

Much of my diabetes journey has been filled with anger, frustration, denial. I have been grieving for my life before I got sick, which is incredibly hard when there is no professional help available.

Over the last 2 years, I have felt like much of my identity has disappeared since diagnosis and I am still struggling with acceptance. It can be really difficult to separate yourself from your illness/illnesses, especially when diabetes demands your attention and focus, 24/7. On top of that, I have Dysautonomia/Autonomic Dysfunction. This affects my heart rate, respiratory system, blood pressure, digestion, bladder control, to name a few. I have intense brain fog and fatigue, and it is hard to function ‘normally’ each day. It just feels surreal all of this has happened.

Courtesy of Charlie Granby

Prior to my diagnosis, photography and filmmaking had always been my outlet, and it is quite essential to my mental wellbeing. I have always struggled with anxiety since childhood, and my mind races so often, it can be hard to focus. Photography gives me a focus, it stops moments in time to allow those fleeting moments to become something to appreciate and process.

With chronic illness, your brain can never switch off, and anxiety is ever-present. It has taken quite a while, but I finally feel at a point where I can recognize myself again to an extent. This has come about after figuring out what my coping mechanisms are, and how to utilize them. No one can ever really prepare you or be prepared for life with a chronic illness. With type one diabetes, every single day is a literal fight to stay alive and it’s not to be taken lightly. It is exhausting. But we go on.”

This story was submitted to Love What Matters by Charlie Granby. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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