By Mohammed Ahmed Yabagi.
Maryam Abdullahi, a beautiful sight to behold, is a patient of the deadly sickle anemia disease. She is in her early twenties and a first year Student of National Open University of Nigeria, Lokoja Study Center. Maryam is a brave young lady that has lived with the stigma of the virus; sadly, she has experienced stigma even from caregivers such as family members and medical personnel from the hospital.
Fed up with the kind of reactions she gets from members of the public, the young lady took it upon herself to create a foundation to help others like her suffering from the disease to share ideas and give each other emotional and other forms of support to help them live longer.
Here is her chat with our reporter in a recent chance meeting…
A brief to your background…
My name is Maryam Abdullahi, I was born here in Lokoja into a family of six children out which I am the second child. I studied for my pre-degree at the Ahmadu Bello University, Zaria before returning home to Lokoja. I am currently a first year undergraduate student with the National Open University of Nigeria; I am studying Public Administration.
What informed the decision to form the Maryam Sickle Cell Foundation?
Before now, I used to hide my genotype from people because of the stigma that people suffering from sickle cell face. But I think it has gotten to the time I have to be brave and take the initiative of bravely telling the whole world that I have the disease. It is obviously a deadly disease that affects healthy living but it is not the making of the carriers. Nobody chooses to be born a ‘sickler’ as many out there refer to us. Obviously our parents should have made a better decision in choosing their partners, but it doesn’t stop the fact that we have been born and need to live as anyone else in this world.
So, the foundation is about advocating for better life for sickle cell patients and educating members of the public on the need to be more accepting of people like us. Education is important and thus, this foundation.
How do you get sponsorship or you self sponsor?
Getting sponsors is not easy and I haven’t gotten any yet. For now, it is self sponsored. Of course I am not resting on my oars as I am still looking for sponsorship because currently, it is from my meager resources that I do what I do as regards advocacy and programmes of the foundation.
What efforts are you making to get sponsorship?
I have made a lot of efforts but no positive response yet. I am just hoping that somebody somewhere will see my efforts and stretch the hands of fellowship for the growth of the foundation. I have a lot of plans that I think if implemented, would assist people living with the disease; but I am being hampered by finances.
Have you ever experienced stigmatization; if yes, how did you react to it?
Yes; I have experienced stigmatization and I still do. You see, there is a pervading ignorance out there among members of the public; including, surprisingly, some supposedly ‘educated’ people. People see you in public places or in public transport and they immediately begin to act as though you are a plague they should not come in contact with. It is pathetic!
In the past, I used to be very sad and angry at my parents for bringing me into the world with the sickness, but overtime, I have learnt to love them and myself more after gaining a lot of information about the disease and its cause. So, what I do to those who care to listen is educate them about sickle cell and the effects of stigmatization.
I hate being pitied by anyone. It is not pride or anything remotely close, but it is about self esteem. Truth is stigma kills carriers of some diseases because they lose their sense of self worth in the process of thinking of the stigmatization. For that reason, I always correct those that I know have the temperament and time to learn; but at other times, I avoid people, especially those who are not ready to get educated.
Give me an instance of where you have ever experienced stigmatization?
I experienced stigmatization during my primary and secondary school days. During that time, I was totally ostracized on many occasions. I was exempted from participating in many activities especially by my class mates. They treated me as though I could not do anything and would die at any moment. It was pathetic for me. I didn’t know what to do and used to keep to myself a lot. But after secondary school, one event lead to another and I came out of my shelf with the resolve to change the narrative around the disease and its carriers.
The sad thing is I suffered stigmatization even from some family members who referred to me as an ‘Ogbanje’(Spirit Child) and a child unnecessarily suffering her parents.
The most surprising aspect of the whole is probably how we are treated by some Doctors and Nurses in the Hospitals. Some of them see us as patients that exaggerate the pains because they are drug addicts.
Do you mind if I ask you a personal question?
No. I don’t mind. Please go ahead.
Do you have a lover, like a partner?
Yes; but that has been a whole lot of hell too. Stigma is attached to that area too.
Please explain how…
Before I started my advocacy, I used to hide my genotype from guys because it scared them off. The fact that I have the disease does not make me less of a human; and so, it used to hurt me a lot that people get unnecessarily scare of coming close to me. Now I believe that any man that truly loves me will be there for me irrespective of my health challenges.
I don’t blame them though; it takes a strong person to cope with us because it is not easy to be with someone with sickle cell anemia disease.
Do you think people avoid sickle cell anemia sufferers because they are high maintenance?
Yes; I know it is the number one reason; but there is also the fear of us not living long, which is a lie. Those without sickle cell can die any moment, so can people with sickle cell. While I understand that our crisis periods can be very unsettling, I think with enough love, care and attention as well as regular intake of drugs that help us in managing our health, people living with the disease can live a normal life like the rest of us. You just have to be careful the person you chose for a partner.
Have you ever discussed marriage with the person you are currently dating; what was his reaction?
Yes. Though he is a very caring and helpful individual and wants me to live a healthy life, I am still watching him to see how he would react in my moment of crisis. He has not seen me in crisis and so, I still think it is easier said than done. How he handles me in my moment of crisis will determine our lives going forward.
Anyone that wants to be with me has to first see me as a normal person and accept me for who I am.
What is a typical crisis period like for an average sickle cell patient?
It depends. It can take days, weeks even months. It depends on the situation and level of complications.
What do you look forward to in life? What do you want to be in future?
Well, my nature is one that pricks me to want to help anyone in need. My ambition is to become a philanthropist. I want to help a lot of people to achieve their dreams in life. I want to be a blessing to a lot of people.
You are welcome.