Kindred Spirits

Posted on May 21, 2011 at 11:00 AM

I guess there are only SO many times you can say “No thank you, I can’t do that,” or “I’m sorry I’ll have to cancel today” to well meaning family and friends. Eventually they tire of your response and stop asking. The sceptics amongst them might even challenge your reason; with, “But you don’t look sick” or, “Surely you can?”


This is the harsh reality of life as a lupus sufferer, or indeed anyone who lives with the debilitating effects of chronic autoimmune disease.


Lupus, is an incurable, unpredictable, unbelievably frustrating disease. As yet there is no cure; treatments range from anti malarial drugs to steroids, and in some cases cytotoxic drugs (chemotherapy). Treatment may include anti depressants and copious amounts of pain relief. I have an acute sensitivity to some drugs, which means I can’t tolerate everything prescribed; this reaction isn’t uncommon amongst sufferers, it impedes symptom management and prolongs duration.


There’s so little understanding of this disease, often called ‘The Wolf.’ It rears its ugly head when you least expect and stalks our every move! Even when the disease is classed as inactive, the overwhelming exhaustion which plagues almost all of us never leaves. It serves as a reminder that our life is compromised; that we have to take care of ourselves, that we may not assume ‘normality’ for if we do, we may pay a heavy price.


Can you imagine a life where pain affects your every move, where exhaustion accompanies you every day; or the anguish that comes with not knowing which symptom will attack you next?


My history of lupus is life long. I was a ‘sick’ child with many episodes of viral illness. There was always something; I have such vivid memories of my plagued childhood. Frequent urinary tract infections, fever, swollen glands, malaise, painful mouth ulcers, headaches. The affliction continued into adolescence, by the time I reached adulthood symptoms were so varied and debilitating, my life became seriously compromised. My relationships were affected, maintaining employment became difficult, and the overwhelming depression that haunts the chronically sick became too much to bear, and I ashamedly admit to attempting to take my own life.


I know I’m writing on behalf of the millions of lupus sufferers out there. We may not have exactly the same symptoms, but what we do have is a compassionate understanding of each other.


Even though my whole life has been blighted by illness, and it’s the belief that a severe attack of infectious mononucleosis was the catalyst for me developing lupus. It was however, only during the six years prior to diagnosis that I regularly saw a Consultant Immunologist. He knew I was ‘sick’ I was his puzzle, one which was increasingly hard to solve. He would regularly scratch his head whilst shuffling test results around his desk. He had a determined desire to discover what was wrong; he displayed the utmost respect and concern towards me and I felt privileged to have him as my doctor. He noticed a problem with my white cells and platelets; it was as though he was arduously fitting together the pieces of a jigsaw puzzle. One day, I was so ‘sick’ my parents made an urgent call to the hospital and demanded I was seen immediately. I was losing weight, completely devoid of energy, and covered in a rash; my head hurt so badly I was losing the will to live. Thank goodness I was seen, the final piece of the jigsaw slotted into place as a series of blood results finally clinched the diagnosis. I was diagnosed with SLE in 1996 and referred to my now Rheumatologist, a specialist in connective tissue disorders.


I was very ill, I was experiencing ‘stroke’ like symptoms and severe headache. It was at that point I began cytotoxic drug therapy to treat cerebral vasculitis. Lupus affected my pelvic organs, damaged my eyes, I have symptoms too painful to disclose. I have widespread osteoarthritis in my whole spine, knees, hips and feet. Fibromyalgia affects my soft tissues, making at times even the slightest hug painful. No amount of rest can alleviate the insatiable exhaustion I feel. Symptoms which can be there one day and gone the next, are too vast to mention. The fear is never knowing which one will strike again, and when.


It’s now fifteen years since my diagnosis, I’ve battled other serious illness including breast cancer; I’ve had gynaecological disease and surgery. My life seems to be dominated by frequent hospital appointments with little respite.


I’m a qualified nurse and during the years I was able to work I devoted my life to helping others. Either in a ‘hands on’ nursing environment or in a listening advisory/counselling capacity. My career ended in 2007, since then I’ve battled overwhelming depression associated with the disease: I’ve felt let down by society, abandoned by people I thought were my friends. I’ve experienced reaction from people whose ignorance wont allow them to ‘look’ beneath the surface… The “You look okay so you must be” reaction! I’ve struggled every single day to make sense of my life, to find reason to get up in a morning. All the time attempting to reach out to others, to raise awareness of this wretched disease and the isolation it can inflict on its victims.


I’m sadly alarmed by the lack of understanding and knowledge there is of lupus There’s a high level of support for sufferers of cancer and other diseases which have greater public awareness. Yet, for Systemic Lupus Erythematosus - hard to say yet SO much harder to live with! There is little understanding, and in many cases a lack of compassion. Lupus is incurable, it can be life threatening, it affects the lives of millions of people world wide and continues to compromise mine.


I often blog about the internet being my ‘lifeline’ the isolation I feel at times is devastating. I’ve always been a ‘people’s person’ who thrived on conversation. Giving up work created an enormous void in my life, one great big empty hole! Little by little, people who once called, stopped calling… I’ve been so busy living one day at a time, trying to cope, that I hadn’t realised how insidious isolation could be. It hit me just lately, I’m very much alone in a private anguish that few understand. That is until I discovered a facebook site for lupus sufferers… other ‘lupies’ the endearing name we give ourselves.


It’s been refreshing after fifteen years of feeling ‘alone’ to connect with many people who feel as I do… ‘Alone in a world that few people understand’ I’ve connected with remarkable, courageous people from all over the world, who all share a very special bond… Lupus.


I want to thank each and everyone of you whose life has touched mine over the last few weeks, and say “Never Lose Hope” God bless.


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1 Comment

Reply Meg Joyce
1:37 PM on May 29, 2011 
Wow this is so true. I do wish people could read and understand SLE, I cry inside but no one listens.

Meg xxx