Sharing a part of yourself is never easy. Raising awareness for matters that are not widely discussed, especially amongst young women, has always been an important aspect of me. Especially now with the current pandemic where a lot of people suffer from long-COVID, I feel this blog will help me reach those who have been suffering from several unexplained symptoms and want to understand what is happening.
My name is Christina, and I come from Athens, Greece. I was always intrigued by the connection between mind and body. My main degrees are in Psychology and Neuroscience, but I have also obtained degrees in Classical guitar Performance and Music Theory & Composition.
In this piece, I run through my personal experience with several physical and mental diagnosis leading to the dominant one. But I never feel it is either this or that. We should always take into account that as humans, one will accompany the other. There is no health without mental health — there is no difference between mental and physical health. It is only health. As an aspiring researcher interested in psychoneuroimmunology, I will try to break down some relevant notions.
Starting my early school years, my friends and I would bet that whoever missed a day of school was a ‘loser’. Loving school anyway and never getting sick would give me an easy win. However, after the age of 11, the only thing I remember is being sick. By referring to being sick throughout the passage I mean either having the flu, a bug or inflammation causing me to get fever and several flu-like symptoms.
While at the same time, tendonitis in my dominant-left hand (a condition where your tendon, the thick cord attaching a muscle to a bone, is swelling) knocked on my door. Doctors prescribed me anti-inflammatories for this, however, I had to be on and off these, as they would not help the acid reflux I had since I was a baby (a condition in which acidic gastric fluid flows backwards into the oesophagus, resulting in heartburn).
Being an active kid and entering adolescence with lust for life, it destroyed me when doctors said to quit my activities, such as playing basketball.
At the age of 15, I got a new diagnosis: hypothyroidism, a condition when the thyroid gland is underactive and does not produce enough hormones. Not only I had to give up basketball, soon, I had to also quit my guitar lessons because the pain caused by tendonitis was unbearable, even if I was a year away from my diploma.
I could not write a single thing in school, which undoubtedly affected my mental health. Having my left hand affected by tendonitis, I tried to write with my right hand, which was a disaster. I remember writing during an English spelling test, and even knowing the words, my brain would not cooperate. My frustration at these experiences sparked my interest in the brain’s function.
Studying science subjects in school and being a good student secured me a scholarship to study psychology in the U.K. I do not remember how I came with this choice as my symptoms impaired my cognitive functions a lot — all my teen and early adult years are hazy memories with gaps in between. Have you watched the movie “Brain on Fire”? If not, I recommend it to understand a part of the story.
Funny fact: since my early teen years, I have been exercising, eating healthy, sleeping well and doing all the scientifically proven things to boost my memory and energy. Nothing helped me, maybe just a little to keep going.
Along with my pain and struggles, I tried to stay energetic by studying, working, playing in an orchestra, doing volunteering work and being socially active. Neither do I know how I managed all of these, nor do I remember, but I kept going to the point where my body failed me.
The beginning of the end
Fast-forward to age 23 — my liver was failing for a year despite that I never smoked, did drugs or being obese, by a condition called chronic liver failure which is a form of chronic inflammation in the liver that causes bone and joint aches as well as pain or discomfort in the upper right side of their tummy. My memory was fading, the fatigue was overwhelming, but my will for life never failed me.
While living my dreams (married to the love of my life, moved to London, and started studying Neuroscience), I had a traumatic experience that led me to the psychiatrist in December 2019. It was the only doctor I had not visited all these years, so I was trying to be open-minded. To the psychiatrist, that incident combined with my difficulty concentrating and lack of energy translated to a diagnosis of clinical depression.
My inner self would tell me that cannot be right, however, as a person desperate to feel healthy again, I decided to take the antidepressants.
But my health was declining — this meant I was lying in bed almost all day experiencing pain and confusion.
After eight extremely painful years since 2011, the search about finding out what was wrong with me began. At this point, I am grateful to my parents, who forced me to return home, as it was impossible to find an answer in London. Following five months of visiting several doctors and hospitals, having done nearly all tests — plus having my mum by my side to support that I was not depressed; there it was!
My redemption: autoimmune diseases.
In short, this type of condition develops when the immune system produces antibodies that attack healthy tissue. I was prescribed immunosuppressants in October 2020, and after a month of revisiting the doctors, they were surprised that indeed, I did not have depression. I could breathe again!
Sometimes it can be our immune system that fails us. The resulting inflammation causes fatigue, low mood, low fever, pain all over the body and other exciting symptoms, which is not clinical depression per se. When you are young and experience many different symptoms that doctors ignore for a long time, you start thinking that it is normal, you do not pay attention, believing that this is adulthood.
Inflammation is the body’s function of fighting against harmful “invaders” from injuries, infections and toxins, in order to heal itself. This process takes place when something for example damages our cells and the body starts releasing chemicals that trigger a response from our immune system. As a result,
inflammation can disrupt your mood as well. Who jumps up and down while being in bed with flu? Does that mean everyone has periodic depression? Not necessarily! It means your body is fighting and does not have enough energy, and this is something termed as ‘sickness behaviours’.
A nicely explained article written by Dr Nettis about inflammation and sickness behaviour at InSPIre the Mind, gives a scientific perspective to that. Behavioural changes are observed in physically ill animals as well as humans during an infection. These behaviours include several symptoms such as lethargy, sleepiness, depressed mood, reduced social exploration, loss of appetite, hyperalgesia, and confusion. The set of these behaviours might be accompanied by fever in order to help the individuals to reorganise their perception and actions, to activate the mechanisms to cope with the infection. But imagine that 24/7 every single day when you are battling with an autoimmune disease.
To shed some light, I would like to share my recovery that started almost two years ago. My treatment consists of prescribed vitamins and medications (one is hydroxychloroquine — thanks to COVID-19 this drug has become quite famous) by my doctor, eating a plant-based diet and doing some light exercising. I have also started meditation which helps with pain management and brain-fog. Flare-ups are always around the corner, yet you learn to live with them. Being a healthy energetic individual will never be the same but at least I try to value what I have. By embarrassing my struggles, I came off a stronger warrior.
Somehow in my story, being a young girl did not justify me having abnormal blood results for years. It used to be overshadowed by the fact that the age of onset of autoimmune diseases is usually over 40 years old, albeit recent literature has shown, it may start even around adolescence. It affects more women than men, who are noticed by the doctors, usually when the situation is out of hand. Being young does not indicate absolute physical or mental health. This is why I believe we need more empathetic doctors. Personally, all the ones I visited as a teenager believed it was all in my head.
After a severe fainting episode, a doctor in the ER told my parents: “She won’t make it to complete a university degree”. Well, here I am, completed my postgraduate while having a tough time, and I now start my baby steps into research.
Depression is real and affects a vast proportion of young people, but it would be great to diagnose only when we have excluded other parameters. As I explained previously, I have experienced depressive episodes due to the physical battle of my body. But I could not relate to the description people with depression give. And experiencing all these as a teenager who enters adulthood was surely not the ideal circumstance. But thanks to my husband, family and friends, I did not give up.
To conclude, nothing ever is just in your head. You need to keep searching till you have your answer. It does not mean we have to give up our dreams, but we might need a little more time to reach them, than we initially thought. As one of my favourite poets, Cavafy wrote, it is not about the destination than enjoying the journey.
Connect with your happiness, connect with your sorrow because nothing is permanent, and all kind of feelings enable us to experience the journey of life to the fullest.