RESILIENCE

A patient living with SLE has said of Lupus,

“When you have an invisible illness, it’s had to explain to someone who doesn’t have a clue. It’s a daily struggle of being in pain or feeling sick on the inside when you look fine on the

outside”.

That is generally how most patients who present to the doctor’s room appear, just fine or just ill from a common virus. “It’s like having flu everyday” as described by Toni Braxton who is living with Lupus. Other prominent persons living with Lupus include Selena Gomez, Nick Cannon and Seal.

Systems of the body that are commonly involved in the disease process of SLE include the skin, joints, kidney, cardiovascular system and nervous system. More serious illness occurs when the kidney, cardiovascular and nervous systems are involved. General symptoms include fatigue, joint pain and fever. That doesn’t

sound too different from your ordinary flu, right? Or perhaps even more recently familiar; Covid-19?

A distinguishing feature however is the reoccurrence or persistence of these symptoms. Some patients may develop the infamous ‘butterfly’ rash which spans the nasal bridge and cheeks , bodily rashes, mouth ulcers, swelling of legs, swelling around the eyes, stroke, seizures, depression, alopecia, migraine or feeling shortness of breath.

All these symptoms are generally unspecific and “allover-the-place” so to say. It is this unspecific and diverse nature of disease that has led to delays in diagnosis of patients in the past. Today there exists a generally high index of suspicion among doctors. Should a doctor encounter a patient with this complex milieu of symptoms, (s)he will take bloods, do x-rays and other investigations to help rule-in or rule-out SLE.

When a diagnosis is established, treatment ensues. Patients with SLE are managed by a multidisciplinary team usually led by a Rheumatologist, a specialist doctor. Physiotherapists, occupational therapists, psychologists, inter alia, form part of this team. In cases of more serious illness other specialists doctors are approached viz a nephrologist, cardiologist, or neurologist.

SLE has a highly variable prognosis among patients. The course of diseases ranges from relatively benign disease to rapid progress and at worst fatal illness.

SLE unfortunately does not have a cure yet, but treatment efforts help to keep symptoms at bay. Protection from organ damage is a key focus of intervention too. The onus is on the patient to adhere to mediation, honour appointments and report any new symptoms that may develop. Another important consideration is the effect SLE can have on one’s occupation, education, relationships and finances thus personal and family counselling is offered to patients as part of their wholistic management. Another patient shares on her path to lupus diagnosis,

“I was diagnosed with lupus after many months of trying to find out what was wrong with me”.

This is an experience I hear too often among patients unfortunately. Should any of the symptoms or the trajectory of illness discussed above be relatable; I might advise a pause. A pause to keep that apple away and go see a doctor that day.

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CHAFING TODAY, BRAGGING TOMORROW. RUN LIKE YOUR PHONES AT 1 PERCENT

Ihave only run one international marathon, and that was The London Marathon, a few years ago. The New York Marathon is on my ‘bucket list’, so I was glued to both the TV and my couch on Sunday 6th November ’22. I giggled to myself as I debated with myself. In fact it was like a very busy ‘ping -pong match’ in my brain.

• I am now ‘too old’ for marathons • But how spectacular would it be to run New York. • But it’s FLIPPING FAR. I am only running 10kms and, sometimes a 21km - it’s a hellva stretch to run a 42.2km marathon. • Everyone has excruciatingly painful expressions on their faces. • I now remember the inner thigh chaffing, blisters and losing my toenails!

While this internal dialogue was going on, I suddenly observed that runners were laughing as they ran past the witty, silly and funny spectators’ signs!

It made me remember how the ridiculous spectators’ signs compelled me to keep going, and offered a much needed mental distraction, as I pounded the roads of my various marathons and the Comrades.

This ‘percolated’ in my brain overnight, and then ‘tiggered’ a new habit from Monday 7th November.

I have started making a concerted effort to send inspiring / fun / intriguing / fascinating pictures, poems and articles to family and friends that live in different cities around South Africa, and those living in other countries.

Here’s some research to nudge you ‘to do the same’.

It’s from a study published in the Journal of Personality and

Social Psychology. The researchers did a series of experiments involving nearly 6,000 participants in total, in order to explore the value of reaching out to people “just because” or “just to catch up.” Across all of the study’s experiments, the researchers found that initiators of text messages underestimated how much the recipients appreciated the contact.