I am a journalist, and there is this thing with journalists – they have this insatiable need to inform others about what they learn. Journalists are people who relay information, even if it is information about an autoimmune disorder they are suffering from.
I have been wanting to write about an autoimmune disorder that I have been suffering from. In turn, I wanted to write about autoimmune disorders – a wretched group of diseases that very many people suffer from, but often do not know what it actually is that is making them feel unwell.
I started asking people who I knew had different autoimmune disorders. Many of them agreed to speak to me for the write-up but requested anonymity. Others refused to speak about their disorder. It is understandable as it is not easy to announce to the world that you have something that makes you feel unwell so often.
But autoimmune disorders need to be spoken about and written about because they are more common than we realise. We also need to speak about what we go through because it is a means of helping those who are going through something similar. Suffering from a disease or a disorder is not something that should embarrass or demean us. It is what it is. All we need to do is manage it the best we can, and for that we need awareness. Write-ups like this one are aimed at just that one goal — creating awareness that might tell someone else reading it that “you are not alone”.
For me, it started with just feeling down and listless and unusually cold, very cold. I saw people around me sitting comfortably in air-conditioned rooms with fans on in Karachi summers, but I felt spears of cold entering my ribs and my back. Getting up in the morning became a struggle. There were aches and pains and just feeling down, with no energy. I started realising that I could no longer lose nor maintain my weight that easily. But I knew it was time for an SOS when out of nowhere I would break out into rashes — rashes that would come out of nowhere and disappear without any medication as well.
I googled all my symptoms. My google search findings remained inconclusive. Not knowing what is going on inside your body is one of the scariest feelings because you cannot do much about what you don’t know.
My symptoms led me to knock on the doors of many genres of doctors — general physicians, skin specialists, orthopedic specialists, homeopathic doctors, and even a psychiatrist, as google kept bringing up the suggestion that perhaps this was nothing but depression. It was finally an allergy specialist who, luckily for me, was extra cautious, and advised me to get my tests done, including one for autoimmune thyroditis. The result was clear. I finally had a diagnosis. I have what is called “Hashimoto’s Thyroditis”, and it is an autoimmune disease. It is an annoying disorder to put it simply and honestly, because it makes life a drudge. The good news is that for the most part, it is not an extremely dangerous condition. Yet, living with an ongoing condition is a test of patience — both physically and emotionally.
To put it simply, autoimmune diseases are when the cops who have the job of catching the bad guys start harming the good guys. It is when the body starts getting attacked by its own immune system, and instead of attacking infections and anything that harms us, the immune system starts attacking the normal body tissues.
Why do certain people get them and others don’t is a question medical science is still trying to answer. It can be one of many reasons. For starters, more women get afflicted by these disorders than men do, and one reason experts give is the female hormones, particularly estrogen, that may lead to a predisposition to autoimmune diseases. Another reason could be hidden in our genetic pool. Certain families report higher incidences of illnesses like Multiple Sclerosis and Lupus, but there is no way of telling why some people in these families get them and others don’t.
Are autoimmune diseases on the rise? Many medical experts believe yes they are, and they feel environmental factors like ready use of chemicals and solvents, unhealthy environments, and infections could be the culprits. But others feel that these diseases have always been there but we are just getting better at diagnosing them. Some suspect the increased use of fats, sugar, and processed foods. Unhealthy food choices lead to inflammation that leads to an overactive immune response in the body. Another hypothesis is that use of sanitisers, antiseptics, vaccines and keeping one’s self in overly sterile environments leads to a lack of exposure to germs, and resultantly sometimes our immune system overreacts as a result and goes into autoimmune mode. And maybe, just maybe, stress and emotional trauma triggers these disorders.
Some common autoimmune disorders are Rheumatoid arthritis (RA), Psoriasis, Multiple Sclerosis, Systemic Lupus Erythematosus (Lupus), Inflammatory Bowel Disease, and even Type 1 Diabetes. Some of these like Lupus can lead to serious complications if not managed with care.
If a person has one autoimmune disorder, there are chances that he or she is susceptible to getting another one.
Awareness about my Hashimoto’s Thyroditis has led me to understand better things like where my constant fatigue stemmed from, and why insomnia keeps making surprise visits to me, and also why unexplained aches and pains keep coming and going. I have understood that I have to regularly visit a doctor for follow-ups, and keep a check on my thyroid levels. I have understood that taking medicines regularly is a lifeline. And I have understood that a healthy lifestyle –healthier eating, exercise, yoga, sleep, faith in God – will help me in this fight against this disorder.
I have also come to understand that one needs to be more sensitive to what other people are going through, because we often do not know what is causing that person to feel a certain way. Why do certain people feel down more than others? Why do some people put on weight more than others? Why do some sleep like babies while others struggle to even get a few hours’ snooze? Why do some people feel so hot and others feel so cold? Who knows who among us is going through an invisible but debilitating condition?
Autoimmune disorders are not all bad, then, are they? Maybe they make us a better person.