Those suffering from a chronic illness know it’s the bane of their life and something that few people who aren’t experiencing this for themselves can truly understand. But there is hope, and ways to create light in the tunnel with positivity, support, and a change in perspective.
By Chandrea Serebro
Lori Osrin is 32 years old and is grateful to be here, well enough, to tell her story today. Years ago, she was told by a doctor that she must prepare for complete blindness and practice functioning with her eyes closed, so that when she goes blind she would cope. “Baruch Hashem, it seems he was wrong,” she says.
Her story begins with years of hospitalisations, misdiagnoses, and incorrect treatment plans for the black hole of depression Lori found herself in. Eventually, Lori was diagnosed with Bipolar Mood Disorder, likely brought on by postnatal depression. A combination of the medication and the illness caused weight gain, lack of energy, an inability to function, and a constant feeling of despair. “I had to stop working. Financial struggles were (and still are) very real. Medical aid funds are easily exhausted and after we missed a couple of medical aid payments, we were kicked off the medical aid completely.”
“One Friday night, I swallowed more than 300 tablets. Hatzolah saved my life that night.” One morning Lori woke up with a pounding headache, her vision blurred, the pain unbearable. “I could hardly speak, I could not stop crying, and I was sick from the pain. I remember repeating over again that I could not see, but I felt like nobody was listening or taking me seriously.” Different doctors, tests, and days later, they still couldn’t find the problem – everyone dismissed the vision loss as a side effect of a migraine, but nobody could find any cause of the migraine.
Lori found an ophthalmologist “randomly from Google”, but, she says, “Hashem sent us directly to one of his angels.” After confirmation through a lumbar puncture, Lori was diagnosed with Idiopathic Intracranial Hypertension (IIH), a rare condition, where the body either produces too much cerebrospinal fluid (CSF), or fails to drain the CSF efficiently, causing debilitating pressure headaches, pressure on the optic nerves, and potentially irreversible damage to the eyes.
In the six years since that diagnosis, Lori has had seven operations, mainly shunt insertions, but also eye surgery and too many lumbar punctures to count. “I live with pain. Most days I have a headache. I don’t even mention it anymore; it’s just become a part of my life. If I take some morphine, then the pain level may subside to migraine level.” Sometimes, even after the morphine, Lori finds herself in the hospital casualty ward, “the bane of my life”.
This is a condition Lori has to live with. Not enough is known about IIH, and currently there is no cure, just ways to control it. Shunts that provide relief for a few months, until they become clogged or tangled, or medication that provides relief, while giving nasty side effects, like slowly destroying your kidneys, or gout, everywhere, and the costs are “mind blowing”. But through all of these trials, Lori discovered something beautiful. People.
“People are beautiful. Not all people, but enough to make the journey an amazing experience. Through all of this, Lori also discovered that Hashem sends his toughest tests to his strongest children. I live with the saying: ‘Today’s pain is tomorrow’s strength’.” For a long time, Lori was angry with Hashem. “I couldn’t understand why I was singled out, why I deserve all of this. Somewhere along the way, I put aside the anger. I learned that it’s easier to accept than to be angry. We can’t control or understand why we’re given our challenges, but we can do all that we can to beat them.”
To anyone out there who is suffering from a chronic condition, Lori says: “Let go of the anger. Don’t focus on the way things could have been, or should have been. You are stronger than you realise, in spite of, or probably because of your illness.”
Harelle Isaacs has been living with Crohn’s disease, a chronic inflammatory bowel disease, for over 30 years, and it’s been a lifetime of lessons. “I’ve learned to live with the pain of the disease, the debilitation, and other problems that have afflicted my body, as well as the pain of lost opportunities. But it has also offered me many rewards, and has made me into a stronger, better, and more compassionate person. Now, I can say the disease does not define me. I am much more than my disease.” Harelle has experienced what most of us would only describe as a living nightmare, with mortal scares, pain, and anguish not for the faint-hearted, symptoms including inflammation of the eyes, arthritis, mouth ulcers, piles, and sores on the legs. She has gone for months without eating solid foods, only liquids and nutritional shakes, which socially was hard.
Having to learn to eat again with professional help was another challenge. She has been in an out of theatre. She has gone through periods of remission, as she was during her pregnancy, only for the disease to return the day she gave birth to her son. She has undergone a ‘resection’ – where 75% of her large intestine was removed. She has gone into renal failure resulting in her being in critical condition and being put on dialysis, with the doctor telling her family that she was “fighting for her life”. Harelle has found herself with a perforated bowel, septicaemia, an ileostomy bag –“utterly devastated” throughout it all. Yet, despite it all, “I realised that the alternative was the unthinkable and so I made the decision to do the best that I could and accept what came my way.”
This marked a turning point for Harelle, who began to relish her days of good health and try through it all to live as normal a life as possible, for herself and her son. Harelle was the first person in SA to be administered with a new biologic drug, which meant an infusion every eight weeks in hospital and having to tolerate difficult side effects, but because the new medication “had given me life, which I was so grateful for”, Harelle soldiered on despite this. “For the first time, I was able to hold down a fairly pressurised job, gym as much as I wanted, and lead a normal life.” This included going to watch the Maccabi Games in Israel, a trip to the Game Reserve – things most people experience year in and out without thought. And this is something Harelle has often thought about – how other people, who have never experienced this, could never understand “the feeling of total despondence – the feeling that there is no hope”.
She started a support group for people suffering from Crohn’s Disease and Ulcerative Colitis called The S.A. IBD Support Group – Crohn’s Disease and Ulcerative Colitis, to spread knowledge, experiences, and encouragement to each other. People can join this group on Facebook.
In 2014, Harelle hit rock bottom – she went into renal failure after developing a superbug with septic shock. Over the next seven weeks, Harelle was living a nightmare. Angina, septicaemia, haemorrhaging, blood transfusions, multiple organ failure – a shopping list of horrors. But with family, friends, and the best doctors – Harelle made it. Now, after hearing the words she never thought that she would hear – that she is in remission – Harelle has to deal with the life-long repercussions of this disease and the full effects of the horrors she has lived.
“But that is fine with me – because I have been given my life back.” Living with an invisible disease has taught Harelle that not all suffering is visible or obvious, and she is careful not to judge other people’s actions because one never knows their struggles. Living with a chronic disease, she says, you learn to handle the downs that come with the disease, and the fact that it does not give you notice and affects your entire family – emotionally, physically, and psychologically. “The simple things in life make my heart soar, giving me the strength and will to fight. Like when my son gives me a big strong hug, and you feel the love and caring.”
Tali Brodkin was not an easy baby, suffering from chronic diarrhoea and vomiting, which soon lead to her being diagnosed with Celiac Disease. Her parents were, however, relieved when the paediatrician told them that she would outgrow it by the time she was two years old. Now 47 years later, Tali helps others live with this diagnosis and runs a support group for Celiac Disease.
“Unfortunately, in the 1970s, doctors believed it was something that could be grown out of.” But in fact, Celiac Disease is a lifelong autoimmune disorder which leads to damage to the lining of the small intestine caused by even the smallest amount of gluten that is eaten. The villi, the finger-like projections that are responsible for absorbing nutrients, become inflamed and flattened which results in malabsorption, which can lead to a number of serious health consequences such as anaemia, osteoporosis, arthritis, and digestive cancers.
“To put it simply, if I eat gluten, which is found in wheat, barley, rye, and oats, my body attacks itself. There is no medicine or cure for Celiac, it is merely managed by a lifelong, hundred-percent, gluten-free diet.” Tali has always felt tired and lacked energy. “At school, it felt like I was walking around with lead weights strapped to me. But I just assumed everyone was feeling the same way.” At the age of 37, a doctor tested her iron levels and the results were so low that he realised she had a malabsorption problem, and a further blood test revealed Celiac Disease.
“It is not easy to receive a diagnosis or to come to terms with having a chronic disease. My diet had to change completely and the hardest part was discovering that there was no master list of what was ok to eat and what was not. I learned to scrutinise food labels for hidden sources of gluten.”
Gluten-free for over ten years now, Tali copes with her illness by not dwelling on it. “I cannot change it, so I accept it and get on with living my life positively. I found it helpful to research and educate myself about it – I read widely and have found this to be empowering. It is so beneficial to make use of the wonderful technology we have today – there are online groups, blogs, and forums that keep me positive and up-to-date with the latest research.”
At the age of 8, Benjamin’s parents got divorced. This was a very traumatic time of his life. On the face of it, he was a shy, introverted little boy, but at the age of 11, he was diagnosed with childhood depression and given Prozac, “one of the first of many drugs to come”. “I resisted any form of play therapy or psychology, and continued to sink deeper into depression.” His academic achievements were excellent, and this kept him going, despite being plagued by chronic fatigue.
As he grew up, the anxiety and depression grew too, and traumatic events in his teenage years contributed to repeated bouts of depression. “When I slept over at friends, I pretended I was taking ‘vitamins’ instead of anti-depressants because surely it was not acceptable that a child suffered from a mental illness?”
“At 27, I was finally diagnosed with my second invisible illness, Sleep Apnea. I underwent a sleep study that revealed I stopped breathing 15 times an hour. I was angry that it took so many years for a doctor to suggest that I go for this study and get this diagnosis, relieved that I wasn’t going crazy, that I wasn’t just lazy and that my extreme tiredness was real. Perhaps my life would have been different had I been treated earlier.”
And that, says Benjamin, is it. Depression and anxiety are real; chronic illnesses that millions of normal, everyday people suffer from. “Chronic anxiety is not just an inability to cope with everyday life stresses. It is a constant feeling of heart palpitations, an incessant whirlwind of thoughts, and a constant reminder that you’re not perfect. It’s a fear of not being in control. It’s that inner voice that tells you to worry about upcoming events and assume the worst scenario. In my case, the depression was both hereditary and environmental.”
Benjamin is now nearly 29 years old and has been qualified for seven years in a medical profession. “Yes, I suffer with mental illness, but I am not my illness. I’ve finally accepted the fact that being sensitive is just how I was made. I don’t have to hide it or fix it. I am not broken.” The stigma towards mental illness is great, says Benjamin. Parents should be more aware of their children’s emotions and look out for early warning signs. Sleep apnea is also a common, misdiagnosed condition.
“For years, I felt like a victim and attributed my emotional problems to repeated traumatic events. Through the correct medication, cognitive behavioural therapy, and endless support from family and friends, I no longer resent or hide my two illnesses. Some days you just want to stay in bed the whole day and forget the world exists. It’s not easy to just put a smile on your face when inside is a black hole of despair and gloom. And then when you feel like the world has given up on you, hope whispers one more time. I’m grateful that I’m able to share with people my strengths in dealing with these invisible illnesses. I still struggle with anxiety and daily fatigue, but I’m now more in control of my life. I try to focus on the positive and accept that medication and an apnea face mask are just additional friends who contribute to a happier, calmer me.”
*Name has been changed