The invisible illness: one woman’s journey with fibromyalgia

Numerous visits to doctors, pastors, prophets and sangomas

From pastors and sangomas to homeopaths and medical doctors, Ntando Mbatha spent months searching for relief for her unexplainable and excruciating back pain. It took almost a year until she was diagnosed with fibromyalgia; a debilitating illness that is hard to diagnose, and almost impossible for friends and family to understand. Mbatha recalls her journey for answers to what she calls an ‘invisible illness’.

It was seven years ago when I started experiencing severe back pain, I was just 21 years old. It was incredibly painful. At times I would wake up in the morning and would not be able to use my left leg or arm. I endured the pain – I had no choice. I was busy writing my exams.

I was an honours student at the University of the Free State around the time I started experiencing unexplainable and paralysing back pain. Far from home, desperate to stop the pain, and unable to access the necessary medical treatment at the university’s health care centre, I looked for answers everywhere, with the little money I had.

I started seeing pastors, prophets and sangomas for the pain. A friend of mine took me to a prophet in Johannesburg. He told me to pray, gave me some water to use and told me that someone had put muthi in my books. I was so desperate to stop the pain, I followed his instructions. I often had nightmares, and whenever I used this water, the bad dreams would stop. The pain, however, never did stop.

I tried every avenue in search of answers and relief, including visiting a physiotherapist; and a homeopath, who told me that the root of my pain probably stemmed from unresolved childhood trauma. This was similar to what one traditional healer had told me, and so I started writing down memories from my childhood, in the hope to air my wounds so that they could heal. I continued out of pure desperation. I needed to understand this condition. Why was I going through all this pain?

I performed all the traditional ceremonies I was told to perform; drank all the medicine I was told to drink; and even behaved as I was told to. Whenever I visited a prophet, a healer, and sangoma, I was told something different, with the cause of this condition changing every time and scaring me even more in the process.

Each visit, to anyone and everyone who promised diagnosis and relief, left me more despondent than the last, including an appointment with my family doctor in Emnambithi, who didn’t see this condition as something to worry about. He prescribed pain medication and gave me some ointment with which to massage my back. There was no one I could ask to rub my back at school, not that the ointment helped anyway. There were no results, and the pain was getting worse.

It became so bad that I had to take sleeping pills to have a good night’s rest; and I was stressing a lot about school, which was aggravating the ache. It took almost a year before I would be diagnosed with fibromyalgia, in February 2010.

Fibromyalgia is a common and complex chronic pain disorder that leaves the body in severe pain, tender to the touch and fatigued. Symptoms include unexplained and overwhelming pain, morning stiffness, headaches, painful menstrual periods, tingling and numbness in the hands and feet, problems with thinking clarity and memory, as well as exhaustion. Other symptoms include thoracic pain, irritable bowel, prior history of depression, urinary urgency, paraesthesia, cervical and lumbar pain.

The causes of fibromyalgia are unknown; however, the condition has been linked to stressful, traumatic events such as car accidents, repetitive injuries and certain diseases. It is often misdiagnosed.

My road to diagnosis was long and stressful. There were weeks of hospital visits, tests and very few answers. I went to a neurosurgeon in Bloemfontein. He conducted a number of tests, MRI scans and x-rays. I was then admitted to hospital for a few days, even though it was supposed to be a day procedure.

More doctors came to see me and one neurologist – Dr C Van Coler – decided to take over my case. He explained that he needed to conduct more tests to rule out possibilities of arthritis, a neurological condition, or cancer. I also had to do a range of blood tests to ensure that I didn’t have any threatening blood related diseases. The neurosurgeon decided to take me to theatre for pain block, which was supposed to take away pain for at least six months. Even that didn’t work. After a few days, my doctor explained that I may have fibromyalgia.

According to 2010 statistics from the National Fibromyalgia Association, almost 6% of the world’s population has fibromyalgia syndrome, this does not take into consideration those who have gone undiagnosed. Symptoms usually start between the ages of 20 and 55 years old, the disease is life-long and there is no cure.

Fibromyalgia is an invisible illness. It is so difficult for people to understand because they can’t see it. Sometimes it is difficult for loved ones to understand and even doctors to identify. At times, even when I went to see specialists, they would tell me that I didn’t suffer from fibromyalgia and my case wasn’t convincing enough. It was only when seeing them for the second or third time, that they would be ‘convinced’ that I probably do have this condition. This means sufferers do not only have to deal with the pain, but also stress and depression.

I know what this means. I’ve actually anticipated leaving my job because I cannot handle the pressure and stress, but there are endless medical bills to deal with, so I have to work. I still owe doctors a lot of money because my medical aid doesn’t cover all the procedures, nor do they want to approve my chronic medication application.

In my quest to find out more about this syndrome and share my experiences with other fibromyalgia sufferers, I took to Twitter and Facebook. I met a lot of people online who are suffering; but I realised that none of them were from South Africa. I figured this was because our doctors are hesitant to diagnose patients with fibromyalgia.

Foreign online groups, however, welcomed me with open arms, which created awareness about my condition. There are about 13 groups or pages on Facebook dealing with fibromyalgia, some on the awareness; some as support structures; others claim treatment and give advice on ways to live with the condition. One group that is really helpful is called ‘Back Surgery/Back Pains/Back Problems‘ which has almost 2 000 members. The online space has allowed me to share information on the disease. I know a number of people may be suffering from it but are not sure what to do. Furthermore, a woman from New York has even been encouraging me to contribute a chapter to a book that she is writing about fibromyalgia, so I’ve found a real sense of community online.

Social media gives me the emotional support that sometimes friends and family are unable to offer. Most of my friends, for example, still don’t understand when I tell them I cannot go out partying until the early hours of the morning. I used to be the life of the party, but dancing all night for me only means that I will have to suffer the whole week. My muscles cannot take the strain anymore.

I particularly have suffered worse as a black female. My family believe this condition is either spiritual or ancestral. It would actually be a fallacy to report that only my family members believe this. When I would visit churches, pastors would pray for me; this was in the hope or rather faith that the pain would immediately leave my body. Unfortunately this wasn’t the case and a number of times I was called a non-believer.

Despite the doctors’ visits, endless tests and medical bills, I am able to manage my pain and keep my life on track. I am lucky.

A few months back, a friend from University, Nokuthula Mlotshwa, told me she was diagnosed with fibromyalgia. For the first time I cried. I cried because I knew that she has a long road ahead of her; a road of uncertainty and certainly severe pain, I asked her briefly about her experiences.

She said:“Before I was diagnosed with this condition, I used to have severe pain on my back and pelvic, so much so that I couldn’t sleep at night nor sit or stand for longer than 30 minutes. The different doctors I consulted only gave me medication which unfortunately didn’t help at all. The family doctor whom I finally approached did a thorough body scan and other tests and he finally concluded that I have fibromyalgia.”

Nokuthula told me about how this condition has impacted her life and how she has found a way to live with it. “This condition has crippled me in so many ways. Due to the severe pain, I had to quit my job. Financially, this condition has left me broke. It literally feels like my back is cement; half the time I am tired, depressed and have become anti-social. I cry myself to sleep at night as I reflect on how this condition has crippled every aspect of my life. I still believe that one day I will get my life back, until then, I have to keep strong and believe as there is hope.”

I know what she is going through. You live with the kind of pain you cannot explain, and everyone has a different experience. I can still drive my car, go to work, cook for myself and do yoga and aerobics. I am not sure where I get all the strength to do all this, but I have managed through this excruciating pain, to continue with my life, somewhat.

I live with the pain, every single day. It isn’t easy. Doctors and researchers aren’t sure what causes fibromyalgia, which makes it difficult to find a cure. Also, what works for one sufferer may not necessarily be the best remedy for the next. I have tried hydrotherapy, physiotherapy, biokinetics. These work for some, but none have worked for me.

It is important to find a doctor who is familiar with the disorder and its treatment, which often requires a team approach. The team may include a doctor, a physical therapist, and possibly other care providers.

Doctors, parents, colleagues and others need to be mindful of the fact that pain does not speak. When you have been living with a condition for a long time, chances are you have found a way around it. Finding a way around it doesn’t mean the pain leaves you. Most sufferers don’t seek sympathy, but rather understanding of the condition.

Some days are better than others. We need to create more awareness on these invisible illnesses. I have been fortunate to find a partner who understands that I have pain and sometimes I get depressed. I often need to get back massages and he is always willing to help me. My siblings have also been a great support structure; they do not always understand what is happening, but when I ask them for assistance, they are always willing to help. My family also understand that I cannot help out at home as much as I would love to, since most of my money pays my medical bills.

I have not stopped searching for answers, and I consult the medical fraternity, online support groups and my faith to get through each day of pain. My ultimate goal is to create more awareness about this invisible illness.
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