My name is Hafsa and I’m becoming a speech language pathologist. What I am studying is working for people, it is rehabilitation work. I have family members who are patients of bipolar disorder: my grandfather, my mom and my brother. We all live together. So I have grown up around people with special needs. Somehow I ended up choosing a profession similar to that, a career which requires a lot of me. That’s how it also is at home.
All three of them are doctors, so they are all aware of their condition. But it is still hard for them to manage it. This is why I unconsciously took the role of taking care of them without knowing exactly what it is that I do. As a child, I always knew something was different but I did not know that it is a mental illness. My mother is not like the mothers of my friends. I knew she is taking medicine and that she gets angry sometimes. I was eleven years old when my brother told me that he is also starting to take medicine for his bipolar disorder. Then I knew it is an illness, even though you cannot see it. Bipolar is about extremes – hypomania and depression – and it comes in phases. For me to differentiate that sometimes their behaviour is not them but their disease, took some time.
Together with my nani and father, I took care of my brother, mother and grandfather for a long time before realising it is having an effect on me. When I was 16, I had my first panic attack. Fear just gathered in me without me noticing. The sudden aspect of the unpredictability of bipolar disorder is very difficult. Suddenly an outburst, or suddenly a suicidal attempt. This unpredictability really has made me paranoid, I am always on the look. It got to the point where it was unhealthy. It became a big concern for me that I have a mental illness too. The panic attacks were so often and so intense. I realised that it was getting out of my hand. We cannot predict everything right and my constant panic attacks were triggered by tiny issues. I would sit in a room and when the curtain moved, I would freak out and freeze. The fear was so instilled in me that I was becoming non-functional. Over the years, I set out some rules for not giving into it. I tried to curb it and rationalise what is happening before the panic attack becomes too intense. I ask myself ‘Is there actually a threat’ and realise that I am not going to be harmed.
I am psychosomatic, so when something stressful happens, my body reacts. I throw up, I have acid reflux, I have headaches, stomach pain – all physical symptoms of mental stress – so initially we could not find out the physical cause. Nothing was showing up in blood tests. So we went to the psychiatrist for me and I could not believe this is happening to me. Despite – or because? – my experience as a caregiver, I did not want to be associated with sick people. For me to accept that even I need help myself, and that I don’t always need to be the healer, was a big journey for me. When I went to the psychiatrist, the doctor said that I was not a bipolar patient but that the environment I am around is affecting me.
Juggling of how to take care of others and taking care of myself continues to be very difficult. I forget to take care of myself all the time. There is always damage-control, my guard is always up and I am constantly worried about my mother and brother.
Therapy helped me realise that I cannot keep on doing this without looking after myself first. You can’t pour from an empty jug. You can’t give if you have nothing to give. For me it is important to keep myself busy in my studies. It is important to not limit myself. My work and studies as a language pathologist have helped me get out of my house and look at things from a different perspective.
What I would have liked to hear from someone is that it is an illness, but it is not them as persons. It’s important to try to see whoever is suffering as a person first and then their illness. Only then will you be able to assist them and only then will they be comfortable enough to open up to you and seek out for help. For patients, the biggest step is to acknowledge their illness and seek help. This courage will come when you are supportive enough. For example, we treated our ill family members too long as patients. We had no expectations, we gave them room for their illness and too much leverage. I think this was a mistake. They started to feel useless, as they felt like they were just their illness and not contributing to the family or this world. It is important we involve even those suffering from mental illnesses in our life.
It is also important to recognise that your safety as a caregiver is crucial. If caregivers end up being abused – emotionally, physically – this is just unacceptable. If you don’t feel safe or threatened but you keep on putting up with it because of their illness, it is going to be worse for everyone. Caregivers out there, your safety is important and don’t let it at any cost be compromised.