Updated: Feb 20
For those living with an autoimmune disease, they can often experience symptoms they may pass off as stress, overwork or overtraining. In addition, they may feel there is also a lack of understanding amongst those closest to them and an unwillingness to learn about their illness. This can create a sense of rejection, which can lead to increased feelings of isolation and loneliness.
When a diagnosis of an autoimmune disease is made, there can be a flood of emotions. While there may be relief that it has finally been confirmed, there can also be a feeling that the individual has lost their identity or are now defined by their disease. Today we talk to Sophie about her experience of discovering her autoimmune disease and her journey beyond the diagnosis.
When Sophie thinks back. The symptoms make sense. Although it was nearly 26 months before a diagnosis was received.
"The first actual symptom that I can now attribute to the thyroid problem was hip pain."
Despite MRI's and injections which almost led to surgery. A labral tear that had originally been diagnosed was ruled out. "I had an injection under anaesthesia to investigate the source of the issue, but even after this procedure, I was still getting pain. Despite this, non of the tests being performed could recreate the pain. This is when I first started to think something else could be wrong."
Giving birth in 2011, post-partum exercise was big on Sophie's agenda. She initially experienced an increase in energy, steady weight loss and a nice work-life balance. Essentially picking back up where she left off. During this time she would combine her love for training alongside her job as a personal trainer and her new role of being a mummy.
“All the signs were there but I wasn’t looking deep enough.”
As time passed, she remembers beginning to feel tired and run down, but attributed this to being a busy working mum of a toddler. It wasn't until almost 2 years later that Sophie experienced a symptom that made her think something was wrong.
"Finally my periods stopped. In hindsight, it had been building for over two years, but I had attributed this to being a busy mum."
Despite adjusting her training and increasing her recovery days, trying to counteract how she was feeling, Sophie found she was gradually becoming weaker. In addition, she was over-emotional, laughing one minute, crying the next. She would experience mood swings, including low patience and anger. Lying in bed at night she would stare at the ceiling for hours, unable to sleep. "My skin felt like it was crawling, I would scratch until my skin bled."
"I felt like I was trying to remain a swan on water, but I was no longer paddling. Just drowning."
Even then she still put the symptoms down to overtraining and an overreliance on caffeine she was consuming to prevent her from falling asleep between shifts.
"I thought the high heart rate and the lump in my throat were just me pushing too hard."
Having missed her period for 2 months, she finally attended the Doctors to present the symptoms she had been experiencing. One of which included unexplained weight gain. Being sent away multiple times, the advice was "Write a diary and let's see how we go."
“It is a really lonely place to be”
It is clear from talking to Sophie, that this point in her life was amongst the most difficult. In the health and fitness industry, you are seen as the one with the skills and knowledge to pass on to the people you are trying to help. You are in an environment where people are constantly looking towards you to captain the ship. When you're strength, performance and body image is deteriorating, and every bit of advice you would give to your clients isn't working for you. It can lead you to a very dark place very quickly.
Despite experiencing weight gain she was told by her physician not to worry as she still had a lovely figure. However, it is important to understand that for someone who has a good steer on their body. It was about getting people to understand that the symptoms were not normal for her body.
Still, she continued to be rebuked by the Doctors multiple times.
It had been nearly 3 months since her last period and with no improvement in symptoms. She went back to the doctor.
"I was found to have 2 of the 5 symptoms of Polycystic Ovary Syndrome. The advice was to control my diet and exercise, something I was already doing. I knew this wasn't the right diagnosis and it left me terribly frustrated as no one seemed to be listening or doing any tests."
“She saved my life, simply because she listened”
It wasn't until a friend at work; who was going through her own gynaecological challenges, told me that the experience I was getting at the doctors just wasn't right. Finally, Sophie gained enough courage to go back and speak with another doctor.
"It got to the point where I was ready to fight or flight for 24 hours a day. Even when I was asleep I was not really sleeping. I was drifting in and out of total despair and a ‘press forward’ mentality. Finally, I got a Doctor who listened to my concerns. She saved my life, simply because she listened to me."
This time a blood test was taken.
Despite the blood being taken there was a nervous wait for the result. Sophie knew something was wrong, but there was hope that at least now she would find out the results and get the right treatment.
The day came when Sophie finally received the results. It was on the same day she was being told that her son could potentially be autistic (which has now been diagnosed). She remembers the phone call well.
Sophie was told she had an overactive thyroid, also known as "hyperthyroidism." This autoimmune disease is an overproduction of hormones by the thyroid gland located at the front of the neck. It causes rapid heartbeat, sudden weight loss, tremors, difficulty sleeping and changes in the menstrual cycle. Symptoms Sophie could now clearly attribute to her last few months.
Finally, after 26 months from the very first symptom, she was referred to an endocrinologist, although not before she was brought back into her local GP for additional tests.
"I was pulled back in to do some physical tests to confirm the blood work mirrored up. This included uncovering a soft goitre, checking skin temperature and checking for tremors."
"Usually they would place a piece of paper atop of your hands to check for tremors, although in my case it was easy to see without the paper. I was sat in the doctors chair shaking and sweating for no apparent reason.'
Some other symptoms of hyperthyroidism include increased metabolic rate, rapid heartbeat, increased blood pressure, hot flashes and hair loss.
"I had been teaching spinning classes at the gym, and we used a software called Myzone to track heart rate. I was often at 215-222 BPM through the duration of the class from the warm up onwards.'
It was around 4 weeks until Sophie got to see the endocrinologist. In the interim she was placed on beta-blockers which helps alleviate the muscle tremors and palpitations, however, within a few weeks, breathing difficulties caused Sophie to be taken off them. Then finally after seeing the endocrinologist, I had a confirmed diagnosis of Graves Disease.
Now Sophie had a diagnosis, but would she now feel defined by her illness?
People often brand people by their illness. "You are" as opposed to "You have" is often used. But, we need to understand that this can be incredibly harmful. They do not have a disease but are currently suffering from a disease. As a society, we need to continue to focus on the fact we are much more than the illnesses we are experiencing. Whether they be physical or mental, the illness is just a facet of a persons personality and experiences.
For Sophie, she was now presented with options which included an 18-month treatment plan designed to bring the hormone down to manageable levels. This would help confirm if it was an inflammatory response to an illness that could be corrected. Alternatively if not, the final options would be surgery or radiation.
However, despite having the diagnosis Sophie wasn't out of danger just yet. Within 4 weeks of her diagnosis, additional blood work came back that her thyroid hormone had risen further to dangerously high levels. She was put treatment immediately.
"I began to want to sleep again."
It took about 6 weeks for Sophie to begin feeling better. To her, it was like a miracle. Despite becoming accustomed to her new 'normal' she was now eating 3 meals a day, feeling full, losing weight. In addition, the lump in her throat went and her joints stopped hurting. This malfunctioning organ had temporarily stripped her of her personality and she could now feel her old self resurfacing.
She describes it as being in a yacht in a storm, and finally, after nearly 26 months, the seas were calm and she could hear her thoughts. She thinks back to her worst ever point. Despite being so unwell and suffering from her mental health, she felt like she was screaming and banging on the wall of a soundproof, glass box. And nobody could hear her.
"Sometimes convincing someone to listen to what they can’t see, but you can feel, is hard"
Even within the first 18 months of treatment. Sophie still held onto the fear that it could happen again. However, this time she had support, which made the process feel a little better. Not wanting to be defined by her illness, Sophie continued to work hard in her job, improve her fitness and finally start to enjoy the role of being a mum.
"There were days when sometimes I didn't want to get out of bed, but I did, religiously. I showed up. I showed up for my son, I showed up for Roscoe and I showed up for my clients. Soldiering on is all we sometimes know and there is something really wrong with that.’
Unfortunately, after 18 months she was taken off the treatment and the hormone levels returned. At this point, she was offered the same treatment again. Following two attempts, equalling 36 months, she finally opted for radiation. This has now meant that she requires lifelong medication to manage her thyroid hormone. Something she knows she has to live with but is conscious to not let define her.
Sophie advises, "Listen to your body, if you are training hard and your health starts to decline, consider your work to rest ratio. Apply a process of elimination and look at the obvious. However, sometimes, these things are out of our control and we need help. No amount of time in your life should lead you down a path where you feel unwell or unhappy. Stop soldiering on when your amour is failing.’
Whilst the first 4-5 years of being a Mum has been difficult for Sophie. The ongoing experience has allowed her the opportunity to understand her health and wellbeing more. In addition, it has convinced her to trust her instincts, ask for help and become her own best advocate. Skills she can now carry into the brighter future.
It seems obvious, but being unwell is life-changing. Creating expectations in others that you cannot possibly fulfil can potentially lead to more unpleasant twists and turns. So above all, accept the diagnosis, but don't give into it.
If you need more support or information about autoimmune disease. Try resources like the Autoimmune Institute which have an abundance of information available on their site.