Karen Irvine shares her personal experience of living with Lupus and her disabilities, by sharing how the study of ancient historical figures inspired and encouraged her to keep kicking goals and realise her immense human value
What is Lupus?
Lupus is an autoimmune disease where the immune system in the body attacks its own tissues and organs. The increased inflammation caused by Lupus can have devastating effects on a wide range of the sufferer’s body including brain, heart, lungs, joints, blood cells, kidney function and skin. Lupus is not curable, but is managed by a wide variety of treatments. Some people are born with Lupus, while others may have had a genetic predisposition that was triggered late in life by an illness, medication and in rare cases – exposure to sunlight. A more in-depth medical overview of can be read here.
What are the signs and symptoms of Lupus?
Because of the nature of Lupus and its wide ranging effects, the symptoms can be varied and could present in a number of different ways depending on the individual. No two cases of Lupus are identical, they’re modified by each individual’s genetics and lifestyle factors. Lupus symptoms could be mild or severe, and be either prolonged or happen suddenly for short periods in what are commonly referred to as ‘flare ups’.
This has led to many Lupus sufferers being misdiagnosed due to their symptoms mimicking a different illness, and can make the struggle for many of getting the correct diagnosis that much more difficult.
Common symptoms of lupus include, but are not limited to:
- Inflammation of the joints, including pain, stiffness and swelling
- Headaches, confusion or memory loss
- Dry eyes
- Chest pain
- Shortness of breath
- Fingers and toes that turn white or blue when cold, or during times of stress – also known as Raynaud’s Phenomenon
- Skin lesions that can appear and/or worsen with sun exposure
- A signature symptom of Lupus is a facial rash that appears across both cheeks and nose, often referred to as ‘butterfly rash’
An introduction to Karen Irvine and her journey with Lupus
This World Lupus Day we have the great pleasure of sharing with you the personal thoughts and journey of Karen Irvine, who graciously contributed her quirky story to help others struggling with their Lupus and remind them that they do not struggle or triumph alone. Karen is a successful Business Development Manager of a web development company, and in spite of – or perhaps partly because of – her Lupus diagnosis, is a funny, inspiring and utterly gracious individual.
How Lupus inspired a love affair with ancient history: We Are Not Alone – By Karen Irvine
I have always had a secret wish to travel back in time – you see, I am a major history buff. Most of the people who motivate me lived a very long time ago and every single one had an illness or disability.
I first started to discover these courageous people after I was diagnosed with Lupus. I was 14 years old and it was 1979. My prognosis was gloomy and my future unsure.
A total ban on sporting activities was put in place, and this left me with a lot of spare time. I gleefully immersed myself in the past, and I found I had opened a Pandora ’s Box and it was filled with famous people just like me.
I was no longer alone.
Inspiring figures of ancient history who triumph despite illness and disability
I find it comforting to know that people with illnesses and disabilities have been carving out successful lives for the past three and a half thousand years of recorded history. Let me introduce you to a few of them –
One of the oldest references I found was about one of the Greek gods. His name was Hephaestus. He was the son of Zeus and Hera and was the God of the Forge and Metalworking. He was disfigured and lame. Hera was so repelled by his physical disability that she threw him from Olympus. He was later invited back after word of his divine metalworking skills reached Olympus. He went on to marry Aphrodite, Goddess of Love. The ancient Greeks were an enlightened people. First we have a god who isn’t perfect and he gets the girl!
· King Phillip II of Macedon
Now we move along to the fourth century BC and to the time of King Philip II of Macedon. His injuries were acquired on the battlefield, but as a warrior he was immune to fear and all but impervious to pain. An arrow landed in his right eye as he was besieging a city state in 355BC. He must have been in torture, but he went right on directing the operation to a successful conclusion. Later injuries were to include a shattered shoulder, mutilated hand and successive lance thrusts to the leg left him lame.
As quoted by Demosthenes, after reminding his countrymen of Philip’s injuries, “… he jettisons whatever part of his body fate wants to take away, just so long as he can live with honour and glory with what is left.”
· Julius Caesar
The next name on the list is a very famous one: Julius Caesar. He lived from 100BC to 44BC. During his lifetime Caesar went from being an extraordinary soldier in the roman army to being the dictator of the Roman Empire. Caesar personally annexed Gaul and Egypt for the empire. Julius Caesar was deified and worshipped as a god from 42BC and he also suffered from epileptic fits.
I’d now like to plunge back into the distant past to the land of Egypt. The religion of ancient Egypt embraced a pantheon of gods, but in 1364BC a pharaoh came to the throne who introduced the worship of only one god – Aten.
The new religion was revolutionary, exalting universal harmony, the beauty of nature and love among all mankind (sounds familiar doesn’t it, and Moses is still 200 years into the future). This new Pharaoh changed Egypt’s religion, built a new capital at Armana and married Nefertiti. This woman is acknowledged as one of the ancient world’s most beautiful – another one who gets the girl! This pharaoh is shown with all of his imperfections. His face is elongated, thick-lipped and heavy jawed – So striking are these features that scholars believe he suffered from a glandular disorder called Froehlich’s Syndrome. Like most things Egyptian, this last character comes with a curse. It is said that merely mentioning his name aloud brings great misery and misfortune. In the interest of completeness, and remember you have been warned, the Pharaoh’s name is “Akhenaten”.
· King Yasovarman I of Cambodia
I’d like to introduce you to my personal favourite. His name is Yasovarman I. He was the King of Angkor (Cambodia) from 889 to 900 AD and he was a prolific builder. In honour of his father, he constructed a funerary temple in the middle of a lake. Then he went on to erect a stone pyramid to himself as well as a baray (an artificial lake) to the east of the royal city nearly 13 square kilometres in size. Irrigation from this baray allowed for three harvests per year instead of one – no small accomplishment!
Yasovarman I suffered from leprosy. Every sculpture shows his affliction on the face, shoulders and arms. When Henri Mouhot discovered Angkor just over a century ago, he asked the local people who had built the astonishing city, and many claimed it was created by the “Leper King”.
· King Baldwin IV of Jerusalem
More than 250 years into the future we visit the life of Baldwin IV. Baldwin was King of Jerusalem from 1174 to 1185 AD. His greatest adversary was the Muslim leader Saladin, who had extended his influence from Egypt to Syria.
In November 1177 Saladin marched from Egypt to attack Ascalon. Baldwin rushed to the aid of the city. Trapped within its fortifications, he broke out and defeated Saladin near Mont Gisard.
Baldwin, like Yasovarman, also suffered from leprosy. During his reign Baldwin’s health steadily deteriorated, requiring the periodic appointment of regents.
Not only did Baldwin defeat Saladin but he also knew when to stand aside and accept the help of those around him (something many of us find difficult to do).
· King George III of England
Now we move on to England to visit the life of George III. George was King of England from 1760 to 1820 AD (although the last 9 years he was assisted by his son George, the Prince Regent). George was devoted to his wife Charlotte and they were married for over 50 years. The union produced 15 children (an achievement in itself).
During his reign George’s armies were victorious against French revolutionary forces in 1797 and 1801. Further victories came against Napoleon’s forces in 1814 and 1815. George was responsible for the abolition of the slave trade in England in 1807 and he presided over the great social and economic changes resulting from the industrial revolution.
George was afflicted with Porphyria, a maddening disease which began to disrupt his reign as early as 1765. George III died blind, deaf and mad at Windsor castle on January 29 1820.
· Ludwig Van Beethoven
Elsewhere in Europe the German composer Ludwig Van Beethoven, (1770 to 1827 AD), was making his presence felt in the world of music. Beethoven’s musical career began in 1789 when he became a court musician. His major output consisted of: 9 symphonies, 7 concertos, 17 string quartets, 47 sonatas for various instruments, an opera, 2 masses, several overtures and numerous sets of piano variations.
Beethoven first noticed his hearing impairment in 1798 and it grew steadily worse as time passed. In 1802 he expressed his agony over his growing deafness in a letter to his two brothers. By 1818 Beethoven was totally deaf and relied on small “conversation books” in which visitors wrote their remarks to him. Despite this he continued to compose until 1826. Beethoven’s 9th symphony, composed in 1824, begins with “void music”, which may have originated in the silence and gloom of his own deafness, then explodes with a wonderful array of sounds. One of the most beautiful pieces of music ever composed, the 9th symphony concludes with a choral rendition of the German poet Friedrich von Schiller’s “Ode to Joy”.
Adopting an attitude of gratitude and curiosity
I explained my early diagnosis with Lupus at age 14 and how that diagnosis and a sombre prognosis left me feeling very confused and alone. Thankfully, I grabbed for my history books, and that’s when I discovered some extraordinary people. Each one led a successful life despite suffering from an illness or disability – they were just like me and I felt that I was no longer alone.
A lot of time has passed since then. For 12 of the intervening years I worked for the same company, and then moved on to an even more challenging role with a new one. I was lucky enough to marry my childhood sweetheart and I managed to plan and go on my dream holiday in England and Scotland; this was no small achievement considering I am claustrophobic and afraid of heights. The motivation for many things I have done in my life has come from my love of history and the people I found there.
To all my fellow Lupus sufferers, on this day and every day – remember, we are not alone.
P.S. I’d like to leave you all with this excellent question:
Q: Why is a person living with a chronic illness like Alice in Wonderland?
A: They both manage to do six impossible things before breakfast.
How changing your perspective can change your life
There is absolutely no doubt that the effects of Lupus on those diagnosed, and still waiting for a diagnosis can be severely difficult to live with and navigate.
It can attack from any angle, any time – sometimes all at once. But what all people who suffer from any form of illness or disability will tell you, is that this suffering often gifts a greater sense of gratitude, clarity and happiness for all the things you do have in your life.
Karen’s inspiring story and insights highlight just one way in which changing your perspective on how you see yourself and your illness can be life-saving, and ignite passions that last a lifetime as well as how to celebrate the achievements and goals you reach over time – those wins are much sweeter because of the obstacles that tried to get in the way.
So this World Lupus Day, celebrate yourself. Take stock of what you want to achieve, and reach out to those that can help you get there – they might be anyone from your family, friends, doctor, counsellor or support coordinator.
Make sure to glory in all that you have achieved, not in comparison to others, but in comparison to how hard you worked to get there.
If you are struggling this World Lupus Day or any other day, know that there are people there to support you but most of all remember that you are not alone with your illness. Thousands of others are in this with you, and with the combined help of our community – we’re all in this together.
ConnectAbility is proud to support its clients living with Lupus on this day and remind them to contact us if there is anything they need or want to discuss with us to help continue making their lives better and reaching goals.
Lupus resources and further reading
- Lupus Association of NSW – https://lupusnsw.org.au/
- World Lupus Day –https://worldlupusday.org/
- World Lupus federation – Support groups in Australia – https://worldlupusfederation.org/countries-beginning-with-a/
- The Lupus Academy –https://lupus-academy.org/
- The Lupus Library – A reading list by Lupus LA – https://lupusla.org/about-lupus/lupus-library/
- Lupus Foundation of America: National Resource Center on Lupus – https://www.lupus.org/resources#
- Lupus Research Alliance –https://www.lupusresearch.org/understanding-lupus/resource-center/
- Garvan Institute of Medical Research –https://www.garvan.org.au/research/diseases/lupus/resources
- ASCIA – Australasian Society of Clinical Immunology and Allergy – https://www.allergy.org.au/patients/autoimmunity/systemic-lupus-erythematosus-sle