It has taken me 331 days and 150 physiotherapy and hydrotherapy sessions to muster up the courage to share my story. But I have decided to do this for three reasons: I want to raise awareness for others facing similar challenges; to mark my readiness to move forward and leave this chapter behind; and to always remind myself and others, that no matter how driven we are professionally, without good health, all else loses its significance.
So, what exactly happened?
On 22 September 2022, a plate of pani puri left me with food poisoning, setting off a chain of events that would test my strength, resilience, and understanding of life in ways I could never have imagined.
A week after I ate the pani puri, my lower back began to ache. I shrugged this off thinking I did something in the gym, but I then felt the pain creep down into my legs. Soon, even the simplest tasks became monumental challenges. Showering, dressing, and even combing my hair literally became impossible.
I found myself in a bewildering maze of doctors' appointments, physiotherapy sessions, and chiropractic treatments. Nothing seemed to alleviate the pain; in fact, it worsened. My legs and arm became paralysed, my mobility restricted, and my once-active lifestyle came crashing down.
The journey from there was one of excruciating pain, confusion, and a relentless search for answers.
What was I diagnosed with?
Over 11 months, various doctors proposed multiple diagnoses, including Guillain-Barré Syndrome (GBS), Fibromyalgia, Lupus, and Sjogren's Syndrome, among others. The doctors arrived at these suggestions through a series of tests, including MRI scans, blood tests, nerve conduction tests involving electric shocks and pin-pricks, and a lumbar puncture.
While these tests may sound intimidating, I believe it's important to highlight them for three reasons:
My tolerance for pain prior to these tests was quite low. If you or a loved one ever find yourselves in a situation where these tests are necessary, I want to reassure you that if I could endure them, so can you (inshAllah);
I found it helpful to always read up about the tests being proposed and the procedures I would have to undergo beforehand so I was not caught off-guard, and I knew what to expect. I could then address any anxiety I had before a procedure with the doctors. On a side note, I would also recommend double checking that the people carrying out these tests have all the equipment necessary next to them, so the tests won’t take any longer than necessary. Unfortunately, my lumbar puncture took much longer and was anxiety inducing because of this, so it’s always better to double-check;
for these kinds of diseases, especially GBS, nerve conduction tests and lumbar punctures are necessary. The doctors need to be sure that you have active GBS because treatment and management of the condition going forward depends on that.
An incredible team of doctors, including my best friend who tirelessly researched my symptoms, finally pinpointed the causes as mild GBS and Lupus. I set out below a summary of how they explained what GBS and Lupus are to me.
GBS
GBS is a rare neurological disorder where the body's immune system mistakenly attacks its own peripheral nervous system, which includes the nerves outside the brain and spinal cord. This attack leads to inflammation and damage to the nerve cells, resulting in muscle weakness, numbness, and in some cases, paralysis.
The exact cause of GBS is not always clear, but it often follows an infection, typically a viral or bacterial infection. The syndrome usually starts with weakness and tingling in the legs and can progress to affect the entire body. In severe cases, GBS can lead to muscle weakness in the chest and diaphragm, which can interfere with breathing and require medical intervention.
The severity and progression of GBS can vary from person to person. Some individuals experience mild symptoms and recover fully, while others may have more severe symptoms and require extensive medical treatment and rehabilitation. GBS is typically treated by managing symptoms, providing supportive care, and in some cases, using treatments like intravenous immunoglobulin therapy or plasmapheresis to help suppress the immune system's attack on the nerves.
Early diagnosis by neurologists and prompt medical intervention are crucial for managing GBS.
Lupus
Lupus, also known as systemic lupus erythematosus, is a chronic autoimmune disease that can affect various parts of the body, including the skin, joints, kidneys, heart, lungs, brain, blood cells, and other organs. In lupus, the immune system, which is supposed to protect the body from infections and foreign invaders, becomes hyperactive and attacks healthy tissues and organs.
The exact cause of lupus is not fully understood, but it is believed to involve a combination of genetic, environmental, and hormonal factors. It is more common in women, particularly those of childbearing age, although men and people of any age can also develop the condition. Lupus symptoms can vary widely and may come and go in flares, with periods of relative remission in between.
Lupus is a complex disease and can be challenging to diagnose due to its wide range of symptoms and the fact that it can mimic other conditions. It can cause a range of symptoms, including fatigue, joint pain, skin rashes, and organ involvement. While there is no cure, treatment focuses on symptom management using medications and lifestyle modifications, such as sun protection, regular exercise, a balanced diet, and stress management, can also play a role in managing lupus and improving overall well-being. Close collaboration with healthcare professionals, including rheumatologists, is essential for effectively managing the condition and maintaining a good quality of life.
The above diagnosis unveiled the sobering reality of autoimmune conditions – often misunderstood, underestimated, and overlooked.
How did I learn how to manage my conditions?
I had to exercise a lot of patience
Since I was younger, I had never taken a break between studies and my qualification as a lawyer (14 years in the making). I really looked forward to taking a short one once I finished my qualification, but I never imagined taking a full year out to just focus on my health. For someone so used to being busy with the hustle and bustle of life, slowing down was hard but I am so glad I made this decision because this hiatus turned out to be a vital step in my healing process.
During this year, there was a lot of trial and error with medications, doctors, and physiotherapists. It’s important to remember that there will be good and bad days. It takes time to find the right fit of people and medicines that work. I just used to tell myself that whilst it is natural to get frustrated with the process, I should not lose sight of the bigger picture – that this was all necessary to get better.
I read, a lot
Knowledge truly is power. However, if you ever find yourself reading about these conditions, please make sure you are reading from reliable sources rather than being a self-diagnosing “google doctor”. This will cause unnecessary anxiety which is something you really don’t need at this time. Through reading, I learnt about the importance of point 3 below.
Diet
This was key and unfortunately, there are not many doctors I met during this time that guided me about this. Through extensive reading, I discovered that dairy, gluten, and to some extent, eggs can exacerbate inflammation. Given my inflammation, I closely monitored how my body responded to these foods. I observed that consuming eggs and bread continuously worsened my back pain. I began incorporating anti-inflammatory foods like ginger, turmeric, and honey. I also started eating a lot of fruits and vegetables.
I must emphasise that I am not a doctor, so it's important to further research the types of foods and supplements that may help. Those interested in delving deeper should seek advice from functional doctors, who specialise in nutritional guidance.
Change of mindset
I was forced to look within and re-evaluate my priorities. I realised autoimmune issues had been lurking beneath the surface, in my body, for years. They were just waiting for the right moment to make themselves known. For example, before I was diagnosed with these more serious autoimmune conditions, I was diagnosed with thyroid (hashimotos) and pre-diabetes in 2021. I have now learnt that autoimmune conditions are interconnected and usually have “friends”. Once you have one, it’s likely to lead to others if you do not control it. This experience taught me the importance of proactively safeguarding health and acting fast to prevent more long-term issues from ensuing.
Movement
Usually people who have autoimmune conditions need to do some form of physiotherapy. I was told to do gentle physiotherapy which involved light massages and acupuncture. However, this never suited me and every time I went for a session, I would get electric shocks down my back and legs. We eventually found out that the best kind of therapy for me was hydrotherapy. This is essentially treatment using water. They were two kinds of treatment I did. The first involved me being placed in a forty-degree pool and exercising with floating weights and resistance bands. Heat was magical for my body and this treatment was great for pain relief and building strength. Once I built my strength, I started the second form of hydrotherapy which was swimming.
It’s important to note two things here: (a) what works for me may not work for you. Everyone’s autoimmune condition is different, and you just have to find what works for you; and (b) discipline and consistency is key here. When I started, I could not float or even lift weights made of the floating material. It took me months to be able to do so.
I never used to understand why people would say “movement is medicine”. But over the last 11 months, I forced myself to stay disciplined with my movement and it has helped me tremendously.
I embraced this season and was kind to myself
I would sometimes get upset at the number of medications I was being asked to take. Every single medicine I took had a side effect and I just did not know what I was going to wake up to the next day. For example, I had points where I would lose or gain up to 5-6kg weekly. I would have a different wardrobe for my normal clothes, or I would size up. During this time, I had to offer myself grace. I also allowed myself to face my feelings head on rather than run away from them. For example, when I wanted to cry, I cried. But I tried to stay as positive as possible, and I reminded myself of how much there is to be grateful for.
I sought help when I needed to
As much as this experience was about me having to take care of my physical body, I equally needed to look after my mind. I would protect my peace at all costs and not surround myself with negativity. I also worked with a therapist for some time who really kept me grounded in moments of uncertainty. I really needed that, and I am so proud of myself for seeking that help when it was necessary for me. Lastly, I turned to prayer and my faith and spirituality really helped me get through this year.
Other lessons I have learnt:
Invisible battles
When I was younger, I would sometimes get irritated when I was running late for university or work and someone would take the elevator for just one floor. During this season, stairs became my worst nightmare and I felt like I was dealing with an “invisible” disability. Through this experience, I learnt that not all disabilities are visible and the empathy I've gained has changed the way I perceive others. It is so important to be kind.
Inclusivity matters
I realised how so many places I visited were not disability friendly and accessible. For example, I was travelling last year, and I had booked wheelchair access in the airport. There was miscommunication with the airline I was using, and there was no one to carry my hand carry up the stairs into the plane. I could not move my legs and during that time I had to wait outside the plane in a wheelchair for 20 minutes while someone organised to put me in a lift that takes you to the plane. It was awful and I felt helpless. More companies and people need to be sensitive and inclusive towards others.
The power of sensitivity
It is really easy for people to pass comments about appearance. Comments like these can be hurtful and ignorant and let’s be honest, they are unnecessary. I've learned that medications can lead to unpredictable changes, and everyone's body reacts differently. Sensitivity in words and actions can make a world of difference.
Advocacy and understanding
Through this experience, I learnt that disability laws exist for a reason. The absence of something as simple as a chair can make a person feel marginalised. Advocacy is essential to creating a fair and inclusive world.
The backbone of support
It’s important to remember that in as much as those looking after us may not physically be able to see our pain, they are hurting just as much with us. Stay strong, positive, and motivated for them. My family, friends and puppy played a pivotal role in my journey. Their love and guidance provided the foundation for my resilience and I will forever be indebted to them for giving me the strength to keep fighting and never giving up.
Conclusion
They say that the human spirit is resilient, but I never truly understood the depth of that statement until I embarked on a journey that would test every fiber of my being.
Although this past year has been a whirlwind of challenges, it has transformed me into someone I admire – a person who prioritises health, practises empathy, and advocates for a world that accommodates every individual's unique needs.
Today, I stand before you, a survivor, an advocate, and a beacon of hope for anyone navigating the uncharted waters of autoimmune conditions. By sharing my story, I hope to ignite a spark of understanding and empathy, encouraging us all to be kinder and more considerate towards others, because you never truly know what their stories are.