Welcome to the Chronic Care Matters podcast, a conversation series of the Chronicity and Care in African Contexts Project.
Chronic Care Matters features conversations with individuals and caregivers with personal experiences of chronic illness, and with researchers, health professionals and advocates who are working with African communities on the continent and in the diaspora. We explore life stories, as well as themes like food, faith, medicine and the mind – tools we can use to prevent and manage chronic diseases, to care for ourselves and for loved ones who live with chronic diseases, and to support caregivers. Thanks for joining us.
Today, Dr Ernestina Dankyi (ED) speaks with Ms Nana Yaa Agyeman (NYA), who lives with multiple sclerosis. Nana Yaa Agyeman was born in 1960 and after basic school, attended Achimota School, OLA Secondary School and Ghana Institute of Journalism. She worked as a journalist until 1996 when she was struck with a condition later diagnosed as multiple sclerosis. She used her experience to found Sharecare Ghana, an association and non-profit of people with autoimmune and neurological conditions.
ED: Good morning, Nana Yaa and welcome to Chronicity Care Africa monthly podcast. We are happy to have you.
NYA: Good morning and thank you for inviting me.
ED: Nana Yaa, please would you like to start by telling us about yourself?
NYA: My name is Nana Yaa Agyemang, I am a sixty-year-old woman and it was in 2003 that I was diagnosed with multiple sclerosis. But my condition started in 1996 and since then I have been living with this condition. Do you want to know more about me or that is fine?
ED: Yes, Nana would you kindly tell us what your life was like before the diagnosis?
NYA: I was working as a journalist for a number of years and at the time I got ill, I was just about to join a new radio station, Atlantis radio station. I just started getting sick, moving from hospital to hospital not knowing what was going on. Until finally I was almost paralyzed from the neck down. That was really the beginning of the journey, 25 years ago.
ED: Thank you, Nana, we also know about this organisation that you run, would you like to mention anything briefly about the organisation?
“Sharecare is actually an association of people with autoimmune and neurological conditions, including several children who we realise are going through serious conditions and their mothers did not know what they have to cope with, so that is Share Care Ghana.“
Nana Yaa Agyemang
NYA: With what I was going through, I just thought others might be going through something similar and may not know what they are dealing with. So, my family and myself thought we should reach out to find out if there are other people facing similar conditions. So that is how we put the message out, and the word that came to mind is to share what I am going through and that was the beginning of Sharecare which later became Sharecare Ghana. Sharecare is actually an association of people with autoimmune and neurological conditions, including several children who along the line we realise are going through serious conditions and their mothers did not know what they have to cope with, so that is Sharecare Ghana.
ED: Thank you, Nana Yaa you mentioned you were diagnosed 25 years ago. I would like to know what a typical day for you is like living with MS, the condition you mentioned?
“The family support is half the coping, because if you do not have somebody to understand and support you, you can just sink into a depression.”
Nana Yaa Agyemang
NYA: I was diagnosed in 2003 but the condition started in 1995. It is a relapsing condition, so along the line I will sometimes lose the use of my limbs and sometimes it will come back. So, in 25 years it all has to do with disability; sometimes I cannot use my leg, sometimes I cannot use my hands and sometimes I cannot even sit up. It is a strange thing; you don’t know from one day to the next what you will be challenged with. But I think with the support of family we have really learnt to cope. Even some of the therapists that look after me are stunned to come and see me one day okay and the next day they come and I cannot even sit up. And they will be like what happened? And I say well, this is what we live in. But my family is not down with that because it is something we have gone through for 25 years, up and down. The family support is half the coping, because if you do not have somebody to understand and support you, you can just sink into a depression. We meet the day with cheer and joy, and that is actually how we cope.
“It is a strange thing: you don’t know from one day to the next what you will be challenged with. Sometimes I cannot use my leg, sometimes I cannot use my hands and sometimes I cannot even sit up. […] Even some of the therapists that look after me are stunned to come and see me one day okay and the next day they come and I cannot even sit up.”
Nana Yaa Agyemang
ED: Thank you, that’s actually how you cope. These swings and changes you talked about like today you are unable to do this and tomorrow unable to do that. In a typical day do you have such swings, or there could be a day that, from rising up to going to bed, you realized you were unable to use your limbs, how would you describe one typical day from waking up to going to bed?
NYA: Unfortunately, with the condition as you relapse the disabilities become more severe. The hope is that everything will come back but the reality is that not everything comes back. So at the moment I am in a wheelchair, don’t have sight in my left eye and I have just regained use of my hands. My left arm went and it came back, and my right arm went and it came back. But I still don’t have the full strength of both hands, so it is like I don’t have the grip. On a typical day, because I am not able to get up myself, I need help getting out of bed to be transferred to a wheelchair and then I go to the bathroom. Fortunately, I am able to do a lot of things in the bathroom but I still need help with my back because I can’t stand in the bathroom. From there I go back to the bedroom and I am helped with everything, with food and everything. I can use my hands now so I can feed myself thankfully. In the wheelchair, I am wheeled to the living room and I watch a lot of TV even though I don’t have full sight at least I can take in the sound. Generally, I can’t read now, that’s something I find a little bit difficult because I love books but at least with technology I can use my computer. I can zoom it up to a full sight and I can get a lot of stuff from the computer and the internet. It is manageable, one will wish for more independence but at least we manage from one day to the next.
ED: Thank you. Our research and that of others suggest that one can live a long healthy life with many chronic conditions but while there are bad days there are also some good days. Would you like to kindly walk us through what a good day in your life will look like and what a bad day will look like. Let’s start with the good.
“You coming out into the sun and you having a good meal and you having family, that’s a good day.”
Nana Yaa Agyemang
NYA: I think a good day is when I don’t have stomach problems, so if I eat something that doesn’t upset my stomach that’s a good day. That means I can be cheerful because when I have a bad stomach, I can’t be cheerful. A lot of things I put down to get a good meal and get a calm stomach. When the sun comes out, I can go out into the sun, and I think that’s very important. A lot of people with chronic conditions stay indoors and I don’t think it is the best. You coming out into the sun and you having a good meal and you having family, that’s a good day. A bad day would be if I wake up with a stomachache or I eat something and my stomach hurts because that goes with all the things that comes with stomachache. Because I am not independent, I need help to be transferred to the loo and I need help with a lot of things. So, if I have a bad stomach and can’t control it whiles I am in diapers, that means it needs to be changed. That’s not very pleasing to myself or to my care giver. But what can you do, it happens and then you look for a better day and move on.
ED: Thank you, while you may have hinted on some of the challenges especially associated with a bad day, I still want to ask what are some of the major challenges you face on a daily basis regarding your condition? And how do you address these challenges?
NYA: I think the major thing, even though I have help indoors, is if I have to go out. It is difficult because I am not independent, I don’t have the use of my legs so I can’t stand. So, if I have to go out and get into a car I have to be lifted into the car. Apart from the weight on my care giver or whoever is transferring me, if the lifting is not done skillfully, it can also give me pain, so that is one thing. Actually, since this COVID began I have been more indoors than moving out of the house. It will be nice to get into the wheelchair and go on the sidewalks or go to the junction and come back but we don’t have sidewalks. So that’s the challenge, you are within the four walls of your house and you can’t go outside the house. If you want to go out, you have to get into a car and entering the car the person has to carry you. Anytime you just think of the stress that goes with that (going out), you just stay indoors. Also, if I want to independently go somewhere I won’t be able to because public transport is not accessible and there are certain places, I want to go but there is no accessibility because they have stairs in spite of the disability law that says every place should be accessible. Outside the house those are the challenges; accessibility, mobility and all the things that should to be done right but are not after many years of having the disability law. So that is one of the advocacy points that we have been talking about. So many years after the disability law, the law is still not functioning. That’s part of the difficulties faced by persons with disability.
ED: Right, I was going to actually hint on that thank you. You talked about family support, which has been massive. I was going to ask about support in general, the structural issue that you just hinted on about the years after the disability law. What can you say about that, can you please elaborate a bit more on what you mean by years after the disability law things are still not right?
NYA: The disability law was passed in 2006 I believe. And under the law every public place should be made accessible, yet we go, or I should say I go to certain buildings and I have to ask whoever in the building to come out to meet me because there is a staircase or even some places it is just two steps which they think is fine but if you are in a wheelchair two steps is a barrier to enter the place unless you are lifted. A lot of the times I refuse to be lifted because it is not dignifying, to have somebody lift you in a wheelchair. Even though they think it is fine, you have people who can help but no. It is a matter of everybody having access, so I should be able to go in independently or even with help but I should not be lifted. Also, public transportation is not accessible, I remember there were some new buses brought some time ago. We actually went to meet the management, but I have forgotten the name of the company, to find out if the buses were accessible and we found out only two of the new buses were wheelchair accessible. So the management was asking us which route we will suggest those two buses ply? And we said there are persons with disability everywhere so we can’t decide which areas will have persons with disability, they are all over the country. So as a matter of policy every bus that has been imported should be accessible. But anyway, I don’t think we got through with that because they are still not accessible. Generally, the structures, the buses and I don’t even try to use public lavatories because I don’t even know if they are accessible. I think it is a matter of prioritizing and a matter of interest, I mean our so-called leaders, they travel and see what happens in the so-called developed world, they admire it, and they come back and do nothing about the issues here. Systems are not in place thereby making life unbearable for persons with disability. It is possible, if it is a money thing, money is available. We use money for other things which I think are unnecessary. Even the ministry buildings that they say are old so they can’t make them accessible, if we are determined to make them accessible, we can do it. They can even put a lift outside the building or even thinking out of the box, if it is a matter of picking up someone from the wheelchair to get the person to the first floor or second floor, it is possible and it can be done but there is no interest. It is not the priority of anybody. That’s my take on it.
ED: Thank you, Nana I also just want to ask quickly about, have you had challenges with stigma, faith-based issues in these years that you have been diagnosed. Do you want to hint on anything concerning stigma and faith? NYA: Stigma not so much because I have a mouth, and won’t allow anybody to stigmatise me. People tend to rather ‘sympathise’, they will be rushing to help you, carry you but that shouldn’t be it. It should be such that a person with disability is so much a part of the society; it should not be sympathy but the person should have access to every facility. Everything should be ‘normal’ for people with disability in society. There is still not enough sensitization among the public. They will even see a person with a leg or arm in a plaster cast, the first thing they will say is ‘sorry’. Because for them they are coming to sympathise over your issue rather than thinking of how we can facilitate this person’s entering into the room or something. They (the public) think disability is something strange and outside what they deal with unless it touches them directly. As for the faith based issues, in 25 years I have had a lot of people claiming they can perform miracles. A lot of times, I don’t let them come near me because it is part of educating people that these are medical conditions. Yes, praying is important, you can pray but don’t leave out the medical aspect. It is God who has given the doctors the knowledge to treat these conditions. Having said that, a lot of chronic conditions are not treatable but are manageable. So, it is still good to keep in touch with the medical people, the pharmacist, the doctors and keep your faith which is a personal thing.
“Yes, praying is important, you can pray but don’t leave out the medical aspect.”
Nana Yaa Agyemang
ED: Faith is a personal thing, thank you. And one last thing before I go to my next question. What about access to quality health care? You have talked about infrastructure and policy issues but health care, from diagnosis to this time what has access to health care been like for you and the cost of health care? Would you like to share?
NYA: That is a big one there, it is one of our issues. With a lot of these conditions, you need the diagnostics, that is, you may need a MRI, or a CT-scan both of which are expensive. So, in Sharecare for example a lot of the members haven’t even received diagnosis because they can’t afford it. And the NHIS doesn’t cover the diagnosis neither does it cover the drugs. So even if you get the diagnosis, you don’t have access to the drugs because the drugs are expensive. Personally, it has been possible because I have had a lot of support, I am fortunate. But even then, it is difficult because the drugs are very expensive and you can’t be asking people to pay large sums of money for something you are going to take for the rest of your life, maybe. So, it is something that really needs to be looked at. From the policy point of view, we talk of numbers, even if it is 10 people that have the (Chronic) conditions, they are part of the society and the country; so should they be ignored just because they are 10 rather than 2 million people who have malaria or something? For me it is not right, it is not fair and we are part of the society and whatever it is, we were even working before we got this condition. We probably paid our dues and maybe we are still paying our dues. And even when it comes to the health insurance, whenever I buy something, I am paying my part of the health insurance even if I am not paying directly. I think these things should be looked at again, all conditions should be covered under the national health insurance. We have been talking about it, so far, we haven’t gone through and we will continue talking before we get through.
ED: We will continue talking until we get through. Nana Yaa please if you would like to give advice, what advice would you give someone who is struggling to manage their own chronic conditions? It could be MS like yourself or it could be any general chronic condition. And with this I would like you to share from a personal experience so people listening can relate or make it accessible to our listeners also. What advice would you like to share?
NYA: I think it is important not to internalize what we are going through. Personally, I find out that when I talk about my condition or when I share what I am going through, even that gives me some relief. So, somebody can then say, ‘oh this is what I also went through’ and we can talk about it. There you will know that you are not alone and you are not suffering alone. I find that when you internalize these things you get depression because you are just wondering why me and why am I going through this? For me when I talk to people, people encourage me, people tell me what they have gone through and that lifts me up. I think if you have a chronic condition reach out, the support group concept I think is a very good one. Human beings we are communicators, so when you communicate you feel better, but immediately you may not know what it does for you. Even talking back to the spiritual, spiritually uplifts you because you know you are not sinking; you know you have a support system that keeps you going. I think that’s important.
ED: From the beginning up to this time you keep hinting that if you don’t have support, you could easily fall into depression. And I just want to ask this very personal question, was there any moment from the time you were diagnosed till now that you almost or actually did fall into depression and what did you do?
NYA: Interestingly, right at the beginning when I was feeling numbness in my limbs, a doctor reached out to me and he actually said I should come and see him to check what is going on with me. So, I went and he did all sorts of clicking on my bones and twisting my body in all directions and then he prescribed some medications for me and I left. At the time I was still driving, so at least I was mobile enough to drive there and drive away. So, I got home and I said let me call this doctor friend of mine, to ask him of these (prescribed) drugs, so I asked this doctor (friend) and he said, ‘well don’t quote me, these are drugs for depression, he (the first doctor) thinks you are depressed and probably making it (the chronic condition) up’. And I said what? I am going through this and you think I am depressed. I didn’t take the medication and years later I met this doctor again and he actually apologized to me and said he didn’t really know what was going on with me and he actually thought I was depressed. Now he knows this was the condition. Actually, some African doctors do not believe that conditions like MS will affect Africans, it is something that they have closed their minds on. Some of the symptoms will be there and they will say it is not possible so you might be depressed. I keep telling people God has given me a gift of daydreaming, so instead of living in the moment, I live outside the moment, if that make any sense. I am able to imagine myself running, kicking, and doing all sort of things and it doesn’t keep me down that I am sitting in a wheelchair. It is something that has been with me for a long time. When I was in school, I will realise the lecturer has been talking for 30 minutes and I haven’t heard a word because I was somewhere else. It used to worry me until I actually got this condition and I said well this is actually a gift. So, I think not everybody have that gift but it has kept me away from depression. Back to the family support they have been there and will be talking to me always. They won’t allow me to be quiet. When I am quiet, they will talk me out of the quietness, and that lifts me up.
“I keep telling people God has given me a gift of daydreaming, so instead of living in the moment, I live outside the moment, if that make any sense. I am able to imagine myself running, kicking, and doing all sort of things and it doesn’t keep me down that I am sitting in a wheelchair.”
Nana Yaa Agyemang
ED: Thank you. How has the COVID pandemic affected you? Has it affected you in any way?
NYA: It has in the sense that; I am now not receiving visitors. People will come in and out before the COVID but now once in a while people will come but I have to wear a mask and they have to wear a mask. And I actually don’t encourage visitors. The vaccination has been very uncertain for people with autoimmune conditions because everything triggers a relapse. Just at the time of COVID, I was going through a relapse, so at the time of the vaccination I wasn’t sure another relapse will be triggered by the vaccination. Honestly, the answers have still not come; the doctor tells me to take it, it will help me but he is not telling me what I will go through after the vaccination and that is what I want to know. I mean I don’t want to have another relapse immediately after recovering from one. That’s really the problem at this time; the uncertainty, staying indoors because you are not sure and generally, I don’t attend meetings, I only do zoom and other such meetings. Because I don’t want to go to the public, that is a big thing. Before COVID, I was going out, at least to the office and to meetings but I am not doing that now. However, thanks to the computer we are able to communicate still.
ED: We are thankful for technology. So, Nana Yaa what are your plans for the future?
NYA: Much of the same, keep Sharecare going. I told you I have lost the use of my hands and it is actually coming back, but then it makes me think there should be a succession plan. There are a lot of members who are capable, besides I founded Sharecare so I have been director since then. But over the years I even tried to say somebody should take over and they said no I started it and I have the idea. But I think it is important to have someone else to come in and maybe understudy me and take over so that we can really keep it going. For me it is important, otherwise like many other things the founder goes on, retires and that is it. But we want to keep it (Sharecare) going, so there should be someone really learning from me to get impacted and take over. So, that is the one thing, someone else should become the director and I can just still be at the background. That’s the plan for the future.
ED: Sharecare has to go on, thank you Nana Yaa. Finally, do you have any questions for the Chronicity Care Africa Project?
NYA: I hope you will get through with this project and make an impact on the way things are done. Hopefully, if Africans will be more sensitive to people with chronic conditions or persons with disabilities, we will move on. But at the moment things are not the best but it could be if there is the will and resources are available. So, let’s move our society forward and maybe with what you are doing will bring that awareness and sensitivity, and we will move on.
ED: Thank you it is our hope to, sensitivity is key and awareness is key. So, it is our hope that this project makes the impact that it was set out to. Thank you Nana Yaa, thank you so much for being on our monthly podcast. We are grateful for your time and the opportunity to have this insightful conversation with you, thank you.
NYA: You are welcome.
Thank you for listening to the Chronic Care Matters podcast. For more insights on Chronic Conditions and Care in African Contexts, please visit our website www.chronicitycareafrica.com and follow us on Instagram, LinkedIn and Twitter [at] Chronicity Care Africa. See you next time.
Ama de-Graft Aikins and Ernestina Dankyi produced and edited the audio of this interview. Ama de-Graft Aikins and Jemima Okai adapted it for the web.