Students talk about living with chronic illnesses

You pass them on your way to the cafeteria, sit next to them in class, hang out with them over weekends. But you often do not know that many of these students battle chronic illnesses on a daily basis.

Take Angelique Barnard, for instance – a 20-year-old first-year student in psychology and English. She was diagnosed with a rare, incurable genetic disorder in August 2019. Barnard has CADASIL (Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy). So do her father and two sisters.

“After my father was diagnosed with this disease in 2018, we had to be tested. The doctor told us we had a 50% chance of inheriting my father’s mutated gene that causes CADASIL. Unfortunately,  after six weeks of waiting for the results, all three siblings [found out that we] inherited the gene,” Barnard said.

Some of the symptoms she experiences are migraines with aura, depression, anxiety, hyper-fatigue, body dysmorphia, eating disorders, seizures when experiencing stress, and mini-strokes. “CADASIL progresses as you get older and the seizures turn into strokes, which later progress to dementia,” she said.

To manage her disease Barnard takes antidepressants, and sees a therapist. Many of the types of medication she is supposed to take are triggers for strokes, so they had to be changed. She is only allowed light exercise as strenuous exercise can push up her blood pressure and heart rate which can cause an aneurysm. She cannot donate blood, be an organ donor, or have anaesthesia. She could have a stroke if she gives birth naturally. She wears an ICE bracelet indicating what procedures and treatments to avoid. 

“I am scared of being behind the wheel due to the risk of having a stroke while driving,” Barnard said.

She started studying law in 2018 but changed courses due to her medical condition. Medical aid companies in South Africa do not cover CADASIL. She wants to move to a country where she will have health insurance, but that meant changing to a course that will be accredited abroad.  

Barnard is tired all the time, falls asleep in class and has “massive headaches” when stressed. A few friends also deserted her after she was diagnosed, but she has a good support system. Her sisters and their father support one another because they know how it feels to live with a genetic disease that can take over your entire life. 

“By looking at my father, I know what CADASIL does the older you get, and I see how it progresses through seeing what it does to him.”, Barnes said. “To me, having this disease is literally part of who I am, embedded in my DNA. The most important thing to me regarding CADASIL is spreading awareness, since no one knows about it, not even most doctors and prevalence is unknown.”

Anita Marais, 22, a BCom honours student in financial accounting, might have a more common chronic condition, it does not make life easier. She has had eczema since she was a baby and says it is an often misunderstood chronic illness.

Marais experience rashes and itching, normally behind her knees, on the inside of her elbows as well as on her fingers. Some days are worse than others.

“When my eczema is very bad, I wear pants and long sleeves to hide it, even when it is hot,” Marais said. Medication and creams will make it better and even take it away for a while. When it is hot I will sweat and it will come back, or winter will make my skin dry and eczema will come back. If I use the wrong cream even once, it can come back.” 

Marais cannot use products that contain colourants and perfume, she cannot wash her dogs or sit on the grass. “Showering takes twice as long because I use a special soap for my eczema, which costs a lot of money each month, as well as a special cream,” she said.

So far the condition has not really affected Marais’ academics, except when she is tired in class due to lack of sleep. “When my eczema is very bad, it can get very itchy at night and keep me awake.”

She recalls that in her first year, she could not use her hands, especially her right, dominant hand, for almost a month, because she got an infection on her fingers after using the wrong cream. “Luckily it was during the holidays, but if it was during a semester, I would not have been able to write down anything the lecturers said.”

Marais’ mother always makes sure she has the right creams and medication to handle eczema before going back to university. “My friends usually try to remind me not to scratch when it becomes itchy or when I scratch.”

That, however, is easier said than done, as she sometimes scratches without even realising it. When her eczema is bad she does the following, “I pray to God that it will become better and I try my best to take the best care of it for as long as possible. I try to push through it and to remember that it will become better.”

Mental health issues can be just as debilitating as chronic physical illnesses. Mental health is a serious issue in South Africa. According to the South African Depression and Anxiety Group, 3-4% of South Africans suffer from bipolar disorder, for example.

Ciska de Waal, 23, a third-year BA communication student, was diagnosed with cyclothymic bipolar disorder two years ago. The main symptom of bipolar disorder is mood swings that come and go in cycles. “You can go from depressed to hypomanic or manic in a period of two weeks or longer. With cyclothymia, your mood swings can happen irregularly, at any time,” she said. Her symptoms include daily mood swings and it can even change in as short as 15-minute cycles.

“It affects all aspects of my life, especially my relationships. It is hard to maintain relationships when you have irregular moods. The depression that comes with the disorder, makes me lifeless and tired and causes me to isolate myself. It also causes anxiety and it mostly leads to overthinking and causes stress in relationships,” De Waal said. 

The disorder influences her academics as depression makes her tired to the point where she cannot get up in the morning. She misses class, does not prepare and sometimes does not study. During the hypomanic phases, she does not sleep and is hyperactive. “It is draining to regulate your moods, or stay in situations that you know will trigger you. The hyperactivity makes concentration difficult and I started using prescription Concerta to help me study.”

De Waal says she has to stick to a strict schedule or routine, and that often does not allow for sudden changes. “Unfortunately, university consists of sudden changes and that leads to many mood swings.”

She mostly keeps quiet about her disorder, due to people looking at her, “as if you are fragile”. On top of that, she does not want to burden anyone and opens up to only a few people.  “Support mostly for me does not entail talking but rather people helping me out. Encouraging me to get up and get dressed, wash my dishes or make my food.” When she has a mood swing, many people think of it as “PMS, I need chocolate, mood swings” when actually it is a full-blown mood change, and sometimes she doesn’t even realise it is happening. 

Besides taking medication, she sees a psychologist weekly, a psychiatrist every six months and undergoes blood tests annually to check her liver functions. She has to stay healthy, avoid a lot of alcohol and other medication that might interact with what she already uses. She copes with either weight loss or weight gain. “If you miss one dose the withdrawal symptoms are severe and excruciating,” she said.

De Waal at first believed that it was not necessary to inform lecturers of her condition as she believed they would not understand, but from experience sending an email explaining your situation will not damage anything. “It happens constantly that I missed tests or assignments because I was too tired to get up, or going through a very emotionally unstable time. In all this time my lecturers were very understanding.”

The hardest part about living with the disease, De Waal said, is because she is  “high-functioning bipolar sufferer”. This means she keeps on functioning without anyone ever noticing that she struggles with mental illnesses. “This is emotionally draining and makes me more tired than normal. Life keeps going on, and sometimes I miss days because of symptoms, and it’s not always easy catching up.” 

Our threestreamsmedia journalist tells her own story:

I was diagnosed with Crohn’s colitis, a form of an immune Crohn’s disease, in 2015 after undergoing a series of tests, the last being a colonoscopy confirming my diagnosis. Crohn’s causes inflammation of the digestive tract and can be painful and debilitating, causing symptoms ranging from diarrhoea, irritability, severe abdominal cramps, blood in the stool, fever, fatigue, loss of appetite, weight loss, and mouth sores. I never know what will hit me on any specific day. Stress makes it worse.

Severe abdominal cramps have sent me to the ER twice. It is these symptoms I hate the most.

Then in July of 2016, I was diagnosed with Graves disease. This is a condition that causes your immune system to attack the thyroid gland and cause it to produce more of the TSH hormone than your body will need. Your thyroid hormones control how your body uses energy and affects every organ, including your heart. Some of the symptoms I have experienced are fast or irregular heartbeat, heat intolerance, nervousness or irritability, tiredness or muscle weakness, trembling hands and trouble sleeping. If left untreated, Graves can cause serious heart and muscle problems. 

In August of 2016, I had radioactive iodine treatment. I had to stay away from people for at least a week to spare them radiation exposure. A side effect of the treatment is an underactive thyroid – the opposite of what Graves causes. So I take medication to regulate these hormones but still battle with fatigue, forgetfulness, unexplained weight gain/loss and intolerance to cold, a puffy face, joint and muscle pain, constipation, depression and a slow heart rate.

I mostly keep quiet about the conditions. This is because I’ve heard weird comments, such as,  “So, Crohn’s is like having a stomach bug?” or, “It cannot be that bad.” And even, “Is it actually an illness?” 

I take five different types of medication (9 pills) every day to curb the symptoms, including antidepressants to help with the emotional lows that come with both illnesses. Remember, there is no cure. Then I get the question: “But you have a physical disease, why drink medicine for your mental health?”

I get tired in class, struggle to focus when I have abdominal pain and need to run to the bathroom often. I can’t drink a lot of alcohol, have to limit wheat/gluten and anti-inflammatory medication is out. I have to see the doctors regularly, cope with medication changes, cope with blood tests – and with my mother who makes sure I never miss an appointment no matter how frustrated I get.

Knowing that there are many other students on campus who struggle with chronic conditions – even if I don’t know them, makes it easier. I am not alone.