Authentic Thriving Podcast
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Authentic Thriving Podcast
Lupus Does not Define Us, It Refines our Strength
Lupus presents unique challenges across different healthcare systems, with financial barriers in Nigeria contrasting sharply with workplace stigma issues in the UK. This powerful conversation reveals the physical, emotional and social impacts of living with an invisible illness.
• Lupus mimics other conditions with symptoms including sunlight sensitivity, joint pain, hair loss and the characteristic butterfly rash
• Different types of lupus exist, including discoid lupus, systemic lupus, and forms affecting children
• Diagnosis in Nigeria can cost upwards of 400,000 naira with severe shortage of rheumatologists
• Workplace accommodations in the UK like hybrid working and flexible schedules can make significant difference
• Invisible nature of lupus leads to harmful misconceptions with people often hearing "you don't look sick"
• Cultural and religious attitudes create additional barriers to seeking proper treatment
• Family support plays crucial role in managing lupus, with relatives' understanding significantly impacting wellbeing
• Finding joy through activities like dancing, photography, and laughter helps with mental resilience
• Mindset and acceptance of the condition allows adaptation and finding new ways to contribute despite limitations
If you're struggling with lupus or another chronic condition, connect with support communities like Mebuvi Lupus Foundation in Nigeria or Lupus UK. Visit www.asebconsultancy.com for mental health support or to book a free 15-minute consultation.
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Hello and welcome to Authentic Traveling Podcast. I am your host, Abiyasudia Ebenezer-Barramudmaru. I am an investor in positive transformation through counseling, life coaching, speaking and also writing books. Have you read my book yet? Inner Harmony Resilience Beyond Chronic Stress and Burnout resilience beyond chronic stress and burnout. This book is available on amazon and also on my website, wwwasebconsultancycom. On this podcast, we talk about our mental health, emotional well-being and also our holistic well-being in order for us to thrive authentically. This is a safe space for you to speak about soulful truth and talk about the things that will help you to come back to yourself and regain your self-awareness. Welcome to the Authentic Podcast once again. On this episode, I am going to be speaking to two lovely ladies. I've got EJ and Safina. So, Safina, I'm going to come to you first. If you could please introduce yourself to our guests our followers, I mean and so they'll know much more about you. Okay?
Speaker 2:thank you, sonia. Thanks for having me on here. My name is Safinat Emengo. I am the founder of Mebuvi Lupus Foundation in Abuja, nigeria. So basically, I'll just try and summarize myself. I carry so many hats on, but I'll leave a lot out of it just for the purpose of this program. Yeah, so basically I have a lupus foundation in Abuja where we try to encourage, support and cater for people with lupus. I'm also a lupus patient, so yeah, so this was one of the reasons why I decided to do my own part by trying to help. So I've been doing this for about five years now and hopefully we're hoping that we're able to spread more awareness about lupus, reach out to more people, not just in Nigeria, in Africa, around the world just speak as much as we can about lupus and see how we can help. Yeah, so that's basically a summary for me, thank you.
Speaker 1:I'm a mother. Okay, thank you so much, safina and you're welcome and, um, I just podcast that was also uploaded. Um, if you go on my youtube I'm sure you'll be able to see, so I really don't need to introduce that. But I'll just get out to, just so. I really don't need to introduce that, but I'll just get her to just say briefly for people that have not seen that episode so, ej, if you just introduce yourself briefly, so that's yeah.
Speaker 3:So my name is EJ a CK, so I'm also. I also have lupus. I've been diagnosed with lupus. I'm currently doing my PhD on lupus on the lived experience of lupus and I'm also a therapist by profession.
Speaker 1:Thank you very much, ladies. I really do appreciate your time. So we're just going to dive right in. And from my discussion with EJ, I noticed that the condition mimicked a lot of other conditions. So, safina, I'm just going to ask you for people that are going through different tests, they are falling ill frequently, or they are falling ill at one point or the other, and really they don't really know what they are treating, because when they treat any of the diagnosis it doesn't really um, the the alien is not forthcoming the way they anticipated. So for people that are already going through these stages they don't know yet if it's lupus what can they do for them to be able to go towards that direction and get the right diagnosis?
Speaker 2:okay, uh, I'll say because, like you rightly said, it mimics other illnesses. There are some common signs that one can tell if you probably would have lupus. So sometimes you could have sensitivity to sunlight, sometimes you could have joint pains, hair loss, the butterfly rash that comes across the face so they call it the butterfly rash because it comes across your face like that that spot. Yeah, so I usually would say to people if you have three to five of the signs of lupus, please see a rheumatologist for proper testing so they'll be able to determine if you do have lupus. And if you do have lupus, they'll be also able to determine what type of lupus you've got, because there are various types of lupus, like, for instance, you have the of lupus you've got. Because there are various types of lupus, like, for instance, you have the discord lupus, you have the systematic lupus. You will have lupus that affects children as well. Yes, so they would need to determine what type of lupus and also try to tailor treatment to the particular individual, because when you say something, it makes other.
Speaker 2:you know it's different for everybody yes so the beat where you have to find out okay, does this person actually have lupus? You find that out. What type of lupus does this person have? How do we tailor the treatment to suit this particular individual? So these are all the cumbersome nature that comes with lupus and trying to identify or find solutions to it.
Speaker 1:Oh wow, safina, thank you for that very insightful share. I didn't even know there were different types of lupus as well. I didn't know that. So now you've also pointed out that it also affects children as well. So people need to be on the lookout. It's not just like an adult condition, it can also affect children as well. Condition, it can also affect children as well. Um, aj, um, in the UK, what? What do you think is mostly the challenges that people are facing? Because you know, like one thing, I know this this ailment does not show in the face right, and I know that there are some people when they see you, um, they they're like you don't have any disability. Why are you claiming this privilege for someone that is already? Because I know that's one of the challenges for someone that is going through that in the uk. What are the things they can do, like in the workplace or, um, getting other people to understand where they're coming from, what? What are the things they can do that will help them?
Speaker 3:um, I think for, like, the uk, on paper, there there's a system which shows that, like, if you have any ailments that you can, um, identify that you have ill and a health condition that's affecting you, that might affect your work, and and all that. So, um, because it's not physically shown, yes, so no one knows what you're going through, no one knows that you're unable to get out of bed or or you're unable to walk, or you're in pain. So there's this article and people use that statement you don't look sick, you. So, basically, it's that system of adjusting work times. Making, as in combining and there's some people that have spoken to, like I've interviewed here in the UK that talked about hybrid work is very helpful.
Speaker 3:So that you work from home and if you're able to go to the office once a week, you'll be able to do that If your work is adaptable. And if you're able to go to the office once a week, you'll be able to do that If your work is adaptable for you to be able to have some days that you can work from home. And there are people that cannot work full time. Someone like me. I can't do full time. It's very difficult for me because I'm always fatigued. So it's that adjustment of when you apply for work you wouldn't feel stigmatised to say you know what? I can't do part-time, I can only do full-time. I can't do from social time. And it's that adjustment If workplaces can adjust to our health conditions to see that things are adaptable for us.
Speaker 3:So, um, find the world a workspace. That for me, stairs is something that is complicated for me. So whatever I'm doing, I need to. I need to use the lift. You might be with some co-workers and they're like, oh, let's use the stairs and you're like I can't use the stairs. They look like why can't she use the stairs? You know Body shaming? Yeah, because sometimes when you're on steroids your face gets bloated, you gain a lot of weight. So over the years.
Speaker 3:I've been so big and people look at you and like, oh, you've added a lot, watch what you eat, ah, don't eat too much and this. And that you know that stare is huge, don't eat too much and this. And that you know that that's, that's there. Is you, I think, with lupus, made me not judge people when I see them, never know what that person is going through. You're asking someone oh, that person has added so much weight, actually so fat, but you don't know what. You don't know the medications they're on, you don't know. You don't know the medications they're on. You don't even know what's happening in their lives. So, adapting the workspace, so be it in hot weather, making sure that it's cooled down when it's cold, making sure that it's warm enough, because when it's too cold your joints are stiff, your fingers are stiff. So all those adjustments are very necessary.
Speaker 3:And I think another thing is disability system and I know people are very sceptical about oh, I don't want to appear disabled or I don't want to be attached to this, I'm disabled, kind of thing.
Speaker 3:It took me a while to do that, to accept it, even in my house, to accept for my stairs to be adapted, because I had that fear. So when someone comes to my house, they will see a stair lift or you know, and it's not my mum, it's me. So it comes to a lot of stigma but at the end of the day, for me to accept that has enabled me to get better. Rather than struggling every time I have a surgery. I need to struggle to get up the stairs or to be a burden to my mom to to worry how she'll take me up and down the stairs. Yes, one thing the uk is like disability system and I know now they're talking about cutting down on tape and all that it's going to affect so many people with health, health, health issues, health conditions, especially those that are not physically the same one, because you can assess somebody based on the fact that you look at her today and she's walking and you assess them and you feel like, oh yeah, she's your health.
Speaker 3:Better job, you know. But that's not the true story. You know they can come the next day they're unable to do anything, they can look okay but they're not functioning. Yeah, but I think is that, rather than assessing people just by their look, just by the day they are okay, when the rest of um the week that you might, you might assess them on the day they are feeling okay, the rest of the week they're not feeling okay. So you're judging them based on what you've seen them. Why not base your assessment on their medical reports?
Speaker 3:Yes, because that says the story. That is just that this person has this, this is affecting this, what are the treatments this person is going to, how is the frequency of those treatments, or how the doctors are able to write that if you're seeing a rheumatologist here in England. So, rather than force people or make people feel so bad to even associate or come out to say, oh, I'm this, I'm that because they will feel judged, they will feel that they will not be believed Because, trust me, sometimes when I look at myself in the mirror, even about the way I feel, I would judge myself as okay. That's just one thing that is wrong. I've talked to a disabled man. Someone came to me and said it's for disabled people.
Speaker 1:The audacity.
Speaker 3:So it's just, there's so many. It's just that judgment. If work some works are very good, I will not. Most of the places I've worked I've been able to adapt my work schedule. If I have an appointment, my son do. This time because of my house I've had that access.
Speaker 3:So in my part I would say I've been blessed to to be able, when I went back to work, to be able to walk part-time, to be able to show them that, okay, this is my illness and I've not felt discriminated against because of my health condition. That I would say. There are people that might say that they have felt discriminated against because of my health, but I'm always upfront with that. So I know, if you're kicking me out at first because of that, just do it now, so it's not like when I've gotten into the door I'll get kicked out. It's just that first thing I say. This is what I have, this is how it affects me, and I think if more people start owning up to that, it would be better to show more awareness that, okay, we want to work. It's not that people do not want to work, it's just that there are limitations. And if workplaces are adapted to suit those limitations, people can function.
Speaker 1:Wow, thank you very much, ej. I like the fact that you said you're very upfront. A lot of people are really fearful. It's not like they want to lie, it's not like they want to deceive you. It's just that they are really, really worried.
Speaker 1:If I tell you the truth, what is going to happen? How are you going to treat me? Is he going to be able to see my skills and my talent and my ability to be able to fulfill the job description, or are you just going to see the condition and no longer me? So if you're out there and you're feeling like that, that's a very sound advice that EJ has given. Be upfront. That's a very sound advice that you just give it. Be upfront with your employer, be upfront with people that you're working with so that they will know now. If they do not understand, then that is your choice and, like she said, if you just want to get rid of me, not better, just do it. So I don't have any disappointment or any expectations based on my own um, my own expectation of what you're supposed to do for me.
Speaker 1:Now, safina, I'm going to come back to you, because that same question is what I'm going to ask you. How are people dealing with this, the challenges that people are facing as regards to working in Nigeria? Because that's just the UK version we've heard. I don't know how it is in Nigeria. Please can you enlighten us?
Speaker 2:Okay, I'm very sure you probably have an opposite idea from what EJ is saying. It's pretty tough Reasons. Are this the system like? We don't have proper policies that guides people with disabilities in Nigeria. It's not properly established. Yes, they are there, but they are not fully functional, if I may say. And when you talk about people thinking about what others will say, I don't know if it's an African traditional thing, I don't know.
Speaker 2:Sometimes someone is actually not feeling well and they will say oh no, don't tell me I'm not feeling well. I can't say I'm not feeling well, I feel strong. It doesn't really stick well with me most of the time. But this is me now. People say, oh, they don't want to say this because it sounds negative. I'm like look, if you're not feeling well, you're not feeling well, it doesn't mean anything. Just say I don't feel well.
Speaker 2:Imagine that kind of person saying oh, I have a disability, I can't walk, like EJ rightly said, if you don't own up to issues because I believe if you have a problem, the first step of solving it is accepting that it's a problem If you can't accept the fact and say has it? Yes, look, I have this problem, I have a disability, I cannot work because of this. How do you begin to solve it? Yes, in Nigeria sometimes to even get a job is hard on its own. I'm sure that's globally, if I'm, if I, if I might say. But again, you now come and say I have have a disability, I can't work. They haven't finished attending to the people that they feel are suitable for the job and you come in On our community and the foundation community. We have like a community where we have quite a number of people with lupus From stories on there. It's a big challenge. It's something that hasn't been tapped into to get a solution at all. A lot of the people on there do not work, cannot get jobs, cannot reach Most of them. I keep saying okay, why don't you try doing a personal business? But because of the fatigue that comes with lupus it's a bit tough. Not all of us have the same energies to push forward. It's a big challenge. It's affecting a lot of us. We are trying to speak with the government agencies to see if they can create policies to aid people with disability to be able to fit into the workplace properly, would I say. I'm hoping that this will get sorted in one year. I don't see it happening. But of course, yes, we can start with baby steps. Yes, if we all agree to acknowledge that this is a big problem, the people who are the sufferers, if they agree to say we have this issue.
Speaker 2:People don't want to come out with fear and be stigmatized when we say this. I don't want to come out with fear and being stigmatized when we say this, I don't know, and then you can't push Because of course you have to be careful. Even me trying to explain, I'm trying to be careful because somebody can be watching this and say, oh, she's negative. Why is she not a believer? Stuff like that. If you're a believer, I believe you should have faith In faith. You should be true to it. So if you say you're a believer, I believe you should have faith in faith, you should be true to it. So if you say you're a believer, you have faith, be true to your condition, be true to what you're dealing with. That solves 90 of your problem. You know, yes, it's a big virus back there. I know that in the uk there's even parking lots for disability and all that. We don't have that.
Speaker 2:You don't even find a wheelchair access. You go to schools. You don't even find that. You try to travel. You see people trying to get on a plane, sometimes the workers they have to lift them onto the plane. So it's a big deal. It's work, general life. When you have a sickness that comes with disabilities, it's a tough one back home. So, yeah, we're hoping we're speaking up. I mean, thankfully some people are beginning to speak up, so we're speaking up and hoping that will be heard and then maybe get some solution, no matter how small. Yes, I always believe in baby steps actually fantastic um surfing ads, what I see there.
Speaker 1:You're battling with a lot of things. You're battling with the, the, the cultural stigma you're. You're battling with the, the religious belief around admitting that one has a condition. You are also battling with the governments that are not doing enough for its citizens. So there's a lot there to unpick in your own case when you're talking about that. Because if people cannot work I know that you just said before in a previous interview with me that the cost of the medication has to be expected is very, very expensive. Now how do people buy the medicines if they cannot work the way they should?
Speaker 2:before you even think of buying the medication, sonia, you even have to think of doing the testing right To determine if you've got lupus. Just a rough amount of my head. If you need to get tested for lupus, sometimes it costs about 400,000 naira and above. Wow, it's just. There's a lady that I know who has not done the testing but she's already taking treatment for lupus and I'd asked her one day. I said why are you doing this? She said because I cannot afford the cost for the testing. But her case she has the butterfly rash which was very obvious on her face. She has you could tell. If a good doctor should see her, you could tell she's got lupus. But my only issue with that case is that how do they not identify the type of lupus she's got?
Speaker 1:Oh, because they have to identify it in order to be able to recommend the right medication.
Speaker 2:Yeah, oh, wow, yes, yeah. And then sometimes people with lupus don't actually just have just lupus, they have other autoimmune diseases. Oh, so in a case like that, my worry is that you're not even getting the proper tailor treatment for you, for that lady. What are the?
Speaker 1:implications of that. What are the implications of that?
Speaker 2:for me. She's not getting the right help at all.
Speaker 1:Do you think she would?
Speaker 2:deteriorate. Well, so far, so good. I think she keeps saying oh, she doesn't feel better, she doesn't know if the treatment is working. So that's one thing For me you're not getting treatment. It's just like somebody having lupus and you're treating malaria. That's dangerous, that sounds very dangerous. Again, it has to do with the financial implication, it has to do with lack of policies. So these are a big problem we've got over here.
Speaker 1:Okay, safina, I know you do have a foundation. Tell me more about your foundation.
Speaker 2:Okay, my foundation, like I said, started from just my own way of looking at oh, how do I help? How do I give back? I've been trying to run this myself privately for five years. It's been tough trying to manage it because sometimes we try to help with free medication and subsidized medication. Free medication and subsidized medication we try to also see how we can help care for people with lupus. When I say that, I mean try to see how we can contribute to their testing, diagnosis, things like that, and, um, also, of course, give advice, support, you know, and rent and all that.
Speaker 2:I can't say it's been easy. It's been very tough. Sometimes, truly honestly, I want to stop, but I can't say it's been easy. It's been very tough. Sometimes, truly honestly, I want to stop. But I can't stop when I look at my DMs. You can't stop when you listen to people's story, especially if you also have loopers. And, funny enough, with loopers like my, loopers might not be as severe. Everyone, I feel, is severe. It might not be as severe as the next person. What I might feel is severe might be nothing to the next person, you know. So I don't know.
Speaker 2:Sometimes it's tough, we're pulling, but we're hopeful. We're very hopeful that soon we should be able to get some kind of help to see how we can spread out this challenges we're facing. Our challenges are mostly financial, financial and also policies. Notice, I've mentioned policies like three times today. We do not have, in fact I feel we don't have policies that protect or guide us health-wise. I don't know why we don't think it's important. I don't know, I don't know. Maybe it's because we're not speaking up enough, you know. So, trying to see, okay, how do we move. But how do you move, even if we want to say the government, the government will only listen if they know, if they can feel the push, because if they don't feel it, if they don't hear, sometimes you walk into a hospital.
Speaker 2:The doctors don't even know what lupus is. I'm talking about nigeria now. Some doctors, some nurses do not know what lupus is. Yes, there was one time I had to even see. He was supposed to be a specialist doctor. I met him in Abuja and I said I have systematic lupus. He was like okay, you know what? Let me Google it, I would place you on the next visit. I was like excuse you, and I was supposed to pay him specially for that visit. Anyway, still today. I don't think I ever paid. So sometimes it's that bad that even the professional you're talking to has zero idea. We lack, like usually, our doctors, mainly for lupus. Usually the main doctors are the rheumatologist, the nephrologist and then cardiologist as well and the dermatologist. But sadly in Nigeria we have very few rheumatologists around, very, very, very, very few. Some states they don't have at all, so, like somewhere in Abuja, if I'm correct, we have about three to four, which is not enough okay, this, this, this is just beginning to sound, I don't know it's.
Speaker 1:It's really heartbreaking. It's very, very heartbreaking for I don't know. It's really heartbreaking. It's very, very heartbreaking for people to have the condition is one. They are struggling to get medication is another Struggling to even get diagnosis that they are ready to risk their life to just take medication that will elongate their life a little bit or give them a bit of ease, knowing very well that you don't even know if you are treating the right lupus. And then you are having professionals I don't even know what it is. Okay, can you signpost people in nigeria to the ones that you know, the people that you know that?
Speaker 2:okay, these are the hospitals that you can find a rheumatologist yes, luckily even on the community, we have the doctors there now so we have we have about two rheumatologists on the community whatsapp group. We have a cardiologist. We have a dermatologist. We have a mental health coach. I forgot to mention that our mental health sometimes can be messed up. So we have that. We have dermatologists as well.
Speaker 2:So, yes, on the group, even in Lagos. So what we try to do as a community, we have, like, I know the person who is championing the Lupus Foundation in Lagos, I also know the person who is in Ipadon, I know the person who is in Kano. So we kind of have our own separate talks. So if there's something we see that will benefit, we have this talk like oh, do you know this, do you have this? So yes, in Abuja, if you want to see the nephrologist, I think she's in the Zenith Medical Care Hospital. There we have rheumatologists in what's the name of this hospital.
Speaker 2:If you go to the national hospital, actually you'll be able to access them as well. Some of them consult privately. I don't think it's appropriate to mention the private practice, because, of course, yes, so, but if anybody needs to see a rheumatologist you find any of us speak to EJ, come through the community, come through myself, we'll be able to tell you. If you're anywhere in Nigeria, we'll be able to tell you. Even in the East, we have communications. We know, okay, go there, go here.
Speaker 1:So yeah, Okay, please bear with me. I just want to be able to, because I know in the UK uk, you are well cut out, for my heart is really breaking for people in nigeria, right, I just don't feel is right, but we can't start pointing fingers. All I'm trying to do here is to be able to do my own beats. I believe that if I do my beats, and especially do their beats, every this person do their bit, every other person do their bit collectively, every little matters, every little helps. So this is why I'm just like kind of getting a little bit, much more from Safinat. Safinat is your NGO? Is it registered?
Speaker 2:Yes, it's fully registered with the Ministry of Health in Abuja.
Speaker 1:Okay, do you do like a good fund me, good fund me kind of the Ministry of Health in Abuja? Okay, do you do like a GoFundMe kind of thing?
Speaker 2:I have never done it. I have a zero clue to doing that. I don't know how to do it, so yeah.
Speaker 1:EJ, do you know anything about GoFundMe?
Speaker 3:Yeah, I've heard of it but I've never applied to do it. But that would be really good for so many people in in the foundation that they really benefit from. Yeah, I think we'll talk again about one of the ladies that is waiting for kidney transplant. Yeah, it's, if you can help us set it up, we'll be very grateful seriously I, I don't mind.
Speaker 1:I don't mind showing you how to do it so that you can have access and have full control over it. Um with the ngo, um, both of you can have full control over it, because I I don't want to be the one to be in control, I want you guys to be in control of it, right, so I can show you later on how to do gofundme um, on how to sign up for it and do everything. But now, the only thing I don't know if they have a Nigerian-based one and a UK-based one, so whichever one they have, then both of you can decide. If IJ is going to set up, the UK one and Safina is going to set up, then you guys can work it out the best way you can. Because I really do feel that you do need to do a lot of publicity for this, because there are kind people out there that will be willing to give, even if it's a one-off giving. So people will be willing to commit to give, maybe as it um commit to it, I don't know, but you need to set up something and I'm not sure if you, the water organization or the un and all of those stuff, if you've been able to tap into fundings that they also give for health reasons as well. If you're able to tap into those funding opportunities as well, so that you can, as your NGO, be able to do much more for these people, because I can only imagine you've got lupus as well and people are also coming to you for support. That is going to add to your stress buckets as well, right? So I'm just thinking ways that you can get that running and then the finances is there so that people can at least get diagnosis and maybe the um, the organization that will be able to send you the medications and things like that.
Speaker 1:But I really do feel you need to position yourself well in a place whereby you'll be able to give. If you wait for the government, a lot of people are going to end up just dying for nothing before the government will come to your aid. So maybe this is a conversation that I will show you how to do those umFundMe and those crowding and then you can find funding opportunities as well within the country and reach out to LUPOS organization outside of the country as well to see how they can point you in the right direction on what to do and how to affiliate yourself with them so that you become like an ambassador for them. These are some of the things that just come from the top of my head, because just thinking about it, I just can't imagine people not getting the support that they need. It can be very frustrating.
Speaker 1:And, as for the mental side of things, that's something that I will be willing to offer some support with Counseling services.
Speaker 1:I don't mind offering free counseling services. As I went due to people, I will be Outside of this interview I'll be able to share with ej and safina. That will be my own contribution and up you every now and then to publicize whatever you decide to go on the funding aspect and drop the link in any or in all of my episodes for people that want to support you guys to just have access to it so they just keep supporting it. But one thing I know that when people are supporting, they also want a lot of transparency to see how these things are going, you know. So if you also have a way of giving this a lot of people five people have been able to get their diagnosis thanks to this support having that your social media presence and things like that the more you do that, the more support you are going to get, because there's no way, safinat and eejit, both of you are going to do this alone. This is way bigger than both of you as in hundred percent of all the awarenesses.
Speaker 3:She sells phones. She travels back to Nigeria to do awareness, even with her condition, like the last, the one that was done this May she went to Nigeria. She did the awareness, called TV stations, she was running around. She came back, she was running the fever. She came to Bolton. She came for the awareness in Bolton. So she's just the superwoman and she just does it out of the blue. And yeah, the GoFundMe is a very good idea. If we can do that, it would help a lot okay, alright, fantastic, so for listeners.
Speaker 2:Safina, what did you say? You go ahead. I'd like to say thank you, yeah, I said before you go ahead. I'd like to say thank you for even offering to do all you've just said. It's highly appreciated, but really just the thought, just even you saying it, means a lot. So I just like to say thank you, so yeah oh you, you're welcome.
Speaker 1:I just want to ask you a favor to subscribe, like and share to your friends, your neighbor, your colleagues, your family, your friends and everybody that you know. I'm really working hard to ensure that I bring useful and valuable information that will help you in your mental and emotional well-being so that you begin to thrive authentically. You know, a lot of us will feel we have to wait until something happens before we become reactive, but with this podcast I am trying to give you information that will make you proactive, so you don't even have anything to react to in the end Because you are looking after yourself properly.
Speaker 1:So what are you waiting for? If you have been listening, please like, share, comment on anything that resonates with you. This will help to drive our visibility. And also, if there is any other topic that we have discussed that has been a trigger or that you feel you need support with, please visit wwwasebconsultancycom. There is a 15-minute free consultation link that you can click on right there and book to speak to one of our counselors. Thank you so much for helping to drive visibility to this platform. And also, if you have been listening on Apple, spotify, audible and every other podcast platform there, please follow us and keep sharing, thank you. Thank you so much.
Speaker 1:Back to the program now. I don't even know what to say. I'm really really like. You know it takes a lot to get me to not know what to say. I'm really really like. You know it takes a lot to get me to be to not know what to say.
Speaker 1:But this one, ah, my goodness, I don't know what to say. You know we are talking about the nigerian policies and everything I'm like. So this would I even care to have at least one phone and say, okay, at least, even if it's just a little to give is is really, really shocking, is absolutely shocking for people that have got lupus as well. We are going to be dropping the link of the um the signposting for those in lagos, for those in kaduna, she said, and in abuja safina, then in bolton as well in the uk. We're gonna put ij's contact there so that she'll be able to signpost you to the right things that you're going to do, because I know ij is doing quite a lot on her own as well. She is, I know, even doing a phd on it.
Speaker 1:I know it's not easy to be doing a phd on something, a condition that you're also going through. That would take a lot on her. So she will have um more information on that, which we will gladly share. Please don't suffer alone, because we know that this condition can severely affect your mental health. Now, aj, I know you have gone through a lot and you have been able to thrive regardless because of the support system that you have for people that do not have a support system. What would you speak to that as in? How can be keen to find the support system that will help them?
Speaker 3:That support system is very important. I think in the group this morning we were chatting about bodying up and one of the ladies in the WhatsApp group did a Google form for people in Nigeria to body up. You know, meet, meet someone, and I think that's very important. I think when here in the UK, when, with my diagnosis, I had to find Lupus UK and I had to join the Lupus UK online um platform, so there you can post questions and different topics and people will respond.
Speaker 3:You can, if you're feeling down, you post it and and that really that really helped me with counseling. In fact, there's this lady. I've never seen her face to face, she's in the us. I met her through that um, that website, and we've been talking ever since. We've've exchanged phone numbers, went on Facebook chat and all that. So it kind of makes you feel that you're not alone. So that way you have some symptoms and wake up and say, okay, you know what I'm feeling this way and people respond. And this is way back before I even knew anything about the Nigerian community. So then it was more like people here in England with the condition. And there was a time I met up with some people like go for like coffee, meet up at the shop have coffee, have chats, meet up at the shop, have coffee, have chats.
Speaker 3:But the only problem is sometimes it's not consistent because people are tired. So the day you might want, the person might be unwell and so they're up to that. But having that, if you can find people, say online groups, where people can open up about what they're feeling, someone said, oh, I'm having back pain, and everyone talked about, okay, this is what I use, or don't bend over and and people crack jokes to you know to make, so that is good. Do you have a family that understands? That's another. That's key, because after with everything, you go back to them, them. I actually have pity on those that have families that do not understand, because that's one thing. When your family, when people say people look at you, people think you're lazy, you know you don't want to do anything, but they do not understand where you're going. When we function, I will know for myself. When we function, we function. I will know for myself when we function, we function like as if there is no stopping. You know, in the same way, we don't get break. You're on that full speed ahead because you know that when you crash, crash, you will crash without there's no barrier to your crashing. And the thing is sometimes, when we're on that full speed, people forget because you're trying to do everything you can at that moment that you have that energy. So you know, I'm so blessed to have my mom because she, she does everything like she's superwoman. Yeah, but when I function like I function, I try to do my best, because it's actually very demoralizing to be a woman, to be a mother, and you come to states where you can't physically function, so it's killing. So even for yourself, when you now have that energy, you want to do something so that they will know that you're still alive, you're not dead yet you function. You do this so that people will know that. But when you now do, and maybe for a period of time you've been doing, sometimes people forget. When you now slump, someone might just come ah, why is this thing here? It has been here since, and someone like me, as in I, I thank god for his grace and for the deafness of my ears when, when those periods, because I'm so deaf I don't have ear plugs, but automatic ear plugs are in my ear because I can't function, so I don't.
Speaker 3:I think it's so important that people have support systems, family support, because they're the ones you go back. I interviewed a lady lady she's in jamaica that didn't have, doesn't have her family support and she had a child, I think at the age of seven, and she had a little too so bad. She said her ears were decaying and would smell. She didn't have a mom around or they, or they didn't understand no one was helping Her sisters, they just called oh hi, and that's it. No one was actually there. So if you're in that situation and you can have a child with that condition, it is a lot. So that family support is very essential because it's something you can follow. We're talking about giving someone or praying for someone. Yes, praying is good, but the things you can say to people there are also other helps you can give to people besides praying. God lives in all of us. They say God made us in his image and likeness.
Speaker 3:That means that he's God in each and every one of us. So what Saphina is doing, she's not folding her hands and waiting for God to come down from heaven to do what she's doing just because there's God.
Speaker 3:She is being that presence of God in so many people's lives. She is playing that role, she is supporting people, she is talking to people and all that. I pray that people have good family support systems. I pray that families do not compare. Let me direct this word to family members. If you have a family member that is unwell, and the family member does not have a physically determining illness that you can say, oh, this person has broken legs, they can't move. Or this person has amputated arms, they can't use their hands, be more understanding, be patient. Do not compare. So if you have a son, do not compare your son with some other person. Oh, your inmates are there. Oh, you're this, you're a woman. Your, your, your inmates are married. You're lying there, you're in pain, man up, woman up, you know, child up, everything up. It is depressing. It is depressing because you want to but you can't. Yeah, they said, the spirit is willing but the flesh is weak weak.
Speaker 3:You cannot. So if, if family members could understand that, okay, this person, how do we help this person? Because it's in helping that person that the person begins to adjust and adapt and begins to function. I wouldn't if my mom rejected my illness and would be like get up, get up. So the first instance, the first instance, I know my diagnosis. I came back from hospital and some of my family members that were there just said to me you have to be moving around so you don't get your reed like a vegetable that word wow wow, just come out.
Speaker 3:So I just came home from hospital. That was the first big time I had in england. I I went to the hospital. I didn't know that I would be admitted. I was just swollen big time, so my kidneys really. But I didn't like I was just reacting to to the first medication they gave me. I got in and they admitted me straight away, told me that I was unwell, that this was not a reaction to medication, that you're unwell. So after like a couple of weeks in hospital going back, some of the people that I met not my mom- yeah and I got into the houses then, oh, you're back, okay, good.
Speaker 3:And then I struggled. I said I want to go home myself. I didn't want anyone to come and pick me, because I've had the history of a child that's been sick or very unwell, so it's that story which is always unwell, so me not being in hospital for so long, and I wanted to prove myself as it's not me. Back in the day you walk in and they say oh, you have to move around or you don't lie around and you just deteriorate like a vegetable. And us Nigerians we have that. Our tongues are very sharp. We make statements that are killing us. I know I walked, I went upstairs to my room and I cried. I was like how will this be the first statement you say to somebody who just came back from hospital? You will not deter, so you have to be moving around. I just came back from hospital, you know, and they say, oh, you have to walk to mass. My mom then was like you have to go to mass every day, you know, and I was doing that and I you have to go to mass every day, you know, and I was doing that. I was killing myself walking. In less than one week my back was swollen. I couldn't move my temperature. They had to call an ambulance to come take me from the house to the hospital. And then one of those relatives now came to the hospital. I was crying oh, I didn't know it was this bad and I was talking rubbish. So it's good to laugh about it now, but it's just a lesson for us and for families. It's not written in the face. That's why, like in Nigeria, they tell you and we say it as a joke you do not know who is alive, don't fight anybody on the street. You can fight the wrong person and the person drops. You just push someone annoyingly and the person drops. That's it, because you do not know what someone is suffering from.
Speaker 3:I interviewed a girl and she was saying that she looked at people like in Lagos carrying like banana peels, and all that under the hot sun. Most of us are very sensitive to sunlight and you see the child sweating, but she has no option. If she slept there, the narrative might be would not be exhaustion or a health condition or something it might be would not be exhaustion or a health condition or something it might be. Oh, there's someone against their family, there's a spiritual problem, there's this, there's that, so there's none. If that child wakes up in the morning and says, oh I'm tired, my body's aching me For no fault of their parents' financial system, you have to wake up and do the same. You don't be lazy, we're quick.
Speaker 3:But I think we're also saying policies For a country like Nigeria that should have financial capacity, because we see a lot of wastage going to places that it shouldn't go. These needs can be met. But people also have to be compassionate, very compassionate. Compassion shows kindness, not just about getting money, but the tone you use in speaking to someone makes a lot of difference, makes the child feel understood so that the little energy they have, they can use it to do something productive. But when we talk down on people, they start forcing it to do something productive. But when we talk down on people, they start forcing themselves to do things which their body cannot muster the energy to do. So I think it is important for families to be supportive because the truth is no one knows what is coming for them tomorrow. Much uncertainty in life, so much uncertainty. But we're very quick. We're very quick in our tongues to just say something.
Speaker 1:Thank you so much, ej. There's so many things you've just shared there and I hope a lot of people will listen. Those of you that have that speak before you think it's very important that you just pause where you just started talking, replay it again, pause, rewind, replay again so that you can digest, assimilate and understand it. That is not everything that the eyes see, that the mind has to speak about, and if you don't have anything good to say, it's better you just keep quiet. They said even a foolish person when they are quiet, they are wise.
Speaker 2:That the man have to speak about, and if you don't have anything good to say, it's better you just keep quiet, they said.
Speaker 1:Even a foolish person. When they are quiet, they are wise. But they are not wise, but in their silence they are appearing wise. So if you don't know anything about a condition, rather than demonizing it, rather than demoralizing the person, please do well to be quiet and ask questions. What is actually lupus? How does it work, how does it affect you, what can you do, what can you not do? And, above all, how may I help you so that I can ease this burden for you, not just ah, no, no, no, god forbid, god forbid. You are silencing the person. We're not saying we are all of us here, we are christians. We're not saying you shouldn't pray, but please do well to listen to the person, know where you're going to pray for. If you don't know what you're praying for, are you going to know where you want to pray for? So please ask questions and listen to understand rather than to respond to say ah, you are just giving up, you're not even fighting this thing. No, you are giving up. Don't give up now. You need to fight. This thing Is the thing? Is there an opponent in the boxing ring? We need to really do calm down Seriously sometimes the things that I hear people say to one another, to people that are poorly.
Speaker 1:I'm like, did someone actually say that to you? They're like, yeah, they did. It just baffles me. So we really do need to be empathetic. We need to learn to breathe through our tongue. Even the holy book says so. Learn to breathe through your tongue and speak very wisely and compassionately, like she has said. This question keep burning in my heart. I need to ask a few notes. Um, have they ever explored herbal remedies? Um, and if there is, is there anyone that that they found to be effective that people could actually explore as well? If not cure, if not to help manage the condition, maybe to also help with energy and you know, with things like that, or to build the immune system up? Is there any herbal remedies like that that both of you are aware of, or is there something that, if you can share? First, okay.
Speaker 2:From experience with people that have lupus I tend to call lupus little native doctors you know when something is wrong with someone and you do not understand it. If somebody comes to you and say, oh, just breathe in three times, you'll be fine. You want to try? Yes, you know. Somebody comes to you and say, maybe if you drink your water at 1 pm and just swallow twice, you'll be fine. You want to try. You want to believe that that would work for you.
Speaker 2:What I would say? I believe that what we eat is sometimes what we become. Sometimes it tells on our health generally. Yeah, I always would tell people, be it lucros, any other thing, just try and eat healthy, eat balanced meals if possible, stay hydrated. You know I don't like to talk about herbal remedies. The reason is this because you're not sure of the quantity you're asking people to take, why? I might say oh, um, sonia, you know, just mix two bell peppers, put one onion in there, blend it, drink it, it might work for you. Ej might say EJ, try this, it wouldn't work right it's a very, if you say it's very funny.
Speaker 2:So with lupus, I would say, if you asked me to be my little native doctor self, I would say try. You would ask me to be my little native doctor self, I would say try and take more greens right you know I for myself I try to do quite a lot of smoothies.
Speaker 2:It helps me doesn't mean it will help the next person. You know somebody else might take the smoothies and start to stew. Somebody else might take these grains and throw up. So if you try healthy meals, stay hydrated, follow your doctor's advice, take your medication. I think I'd rather stick to that than trying to give some advice on herbal remedies.
Speaker 1:No, Safina, you actually did give plenty more than you thought.
Speaker 2:It's only to begin with. No, Safina, you actually did give plenty more than you thought I thought it was too little.
Speaker 1:You actually shared more than you thought. You know, like the greens. Like you said the greens, there are loads of greens, so take the ones that will be healthy. And you're saying eat a balanced diet.
Speaker 2:That's another thing again because some people might think it's business as usual. Somebody might just decide that they will take greens all their life and not eat anything healthy. So that's why I say it's very balanced, balanced diet yes people will say oh, oh, like.
Speaker 2:I have people saying I can't eat bread because I have lupus and I like don't say that it's okay to say I have an allergy when I eat bread, I have an allergy when I eat cakes. People have those allergies. People can eat nuts. Yes, you know, some people can just have processed food, some people can't have carbonated drinks, some people can't have milk. So because this thing my rheumatologist says to me? He said sometimes he tries, because this day I went to see him and I said to him I said I think my knee is seriously failing me, and he touched my knee and he said you're getting old. But I was still struggling to say no, you don't understand. It's really hurting. I can't move in the morning it feels so heavy. He said you are getting old that he wants me to be able to look at life and not say everything that happens to me is you to the person oh, because I wasn't.
Speaker 1:I was a bit confused. I was a bit confused when he said you're getting old, so he's trying to demarcate. Okay, the condition is there, but you are still a human being going through the aging process.
Speaker 2:Right, right, right I find a lot of people with lupus or autoimmune diseases saying oh, what do I eat? Oh, they said I shouldn't eat this. Oh, because of lupus. If I eat this now, it doesn't stay, it's all in the mind. Sometimes it's all in the mind. I keep telling people. One for me. I believe one of the major healing process for anyone who is poorly is your mindset. Yes, if you have that power to control your mind, you've. You will see how. Because there was an experiment that someone was giving out chalk but he had cut it into the shape of tablet and he said that would cure pains. People were taking it and saying I feel better placebo effects effects yeah.
Speaker 2:So if you say, how about just get healthy, eat healthy. Try and eat all the things that you know, keep you right If you know. Okay, this food provides is an anti-inflammatory kind of food, and we all know that lupus and autoimmunity come with inflammations. Oh, take it in moderation, don't take too much, because sometimes you tell people blueberries are good. You'll be shocked at the amount that one person is taking at a go. It now turns out to not affect you instead of helping you. Even taking too much water, too, is bad. So just eat right, eat in moderation, try and live a healthy lifestyle.
Speaker 2:Exercise I know we have this, but I keep telling people because when I say exercise, move your body, I'm not saying do what's a thing to do, because sometimes I think I'm over the top. Even on your bed, you can just stretch your arms, try and move your feet. Just give it some mobility, even when it's in pain. Gently, mobility, it helps you, don't it helps. It's just like you park a car somewhere or any metal. Obviously you don't move it, the rust comes in. So, basically, just live life, eat healthy, eat the grains, don't eat it too much. Moderation do everything in moderation.
Speaker 2:You should be fine, wow thank you from the sun as much as possible oh, how do people in nigeria manage that?
Speaker 1:that is hard.
Speaker 2:That is hard if you're in nigeria, if you're in a climate where it's really hot like that, try, when you're going under the sun, go under the sun when you need to, or try to put on loose clothing. If you can wear sun, hat, sunscreen. Sunscreen should be from maybe plus 50 and above. You know just basically that. Use an umbrella if you can Stuff like that just to help yourself. Don't get the direct rays onto yourself.
Speaker 1:Right, okay, is there anything you want to add to that?
Speaker 3:No, it's the environment, nothing else. Safina had mentioned something very profound. Is there anything you want to add to that? No, it's the headboard.
Speaker 1:Nothing else. Safina mentioned something very profound that, whatever condition that you have in life, even if you don't have condition that will help you to thrive or to be in a state of just survivor, managing is your mindset. Aj, can you tell us because I know she shared briefly can you tell us how you managed to build your mindset over the years despite this condition?
Speaker 3:I think first it was the process of accepting that this lupus wasn't going anywhere, that I have lupus, so I needed to understand that and accept that the statement it's not my portion wasn't going to cut it this time, so for me to accept it. And then I needed to also ask for help and accept the help. When it was open, I needed to also ask for help and accept the help.
Speaker 3:When it was open, I needed to take my medications Because before my diagnosis, I do not like taking medications. You know I'm one of those people that will take antibiotics whenever I feel it's gone. I might not finish the course of antibiotics and I'll abandon the medication, but this one I was. I needed to live as much as I can. So with that came that adapting to know that when I'm tired, I'm tired. I need to stop and I need to rest. When I have the energy, I'll do what I can, I'll function. I'll do everything that I can. So I needed to adapt my situation to my health conditions so that I'll have those pockets where I can function. One I also had a son. I have a son. Things can get to the person at the point that I felt like it might be better for me if I slept and not wake up, that it would be better for my son to function better.
Speaker 3:There were days I felt that just lay down and not let this. But then I think faith also played that role. When I talk like because I also come from a Catholic background, we preach the cross a lot. We preach on the part where Jesus says carry the cross and follow me. So my mom raised me with this idea you know what your pain, offer it up, offer it up as a prayer so it doesn't go to waste. And this is our cross. So my mom made it also part of her cross that this is also her cross to follow. That helped me. That idea that it's not a curse has not abandoned me, that okay, this is my cross and I can still live with this cross if I have god working with me. So that helps me a lot. That helped me to see, okay, I can't do this, but I can do this this so at the point.
Speaker 3:It was a time for years I didn't work. The only thing I could do I started doing was I found that in my church that we didn't have like a youth group and there were older people. Then I was like, oh well, how about starting a youth group? So I started that youth group. We see pockets of things that we can do even when one part closes. So when you move to the UK sometimes I came into the UK the era where everyone was doing health and social care. There's no other career line for you, an immigrant, that is not health and social care. But with my illness there was nowhere I was going to do health and social care because I needed to be lifted. So I can't. Can you hear me?
Speaker 2:Sonia, are you trying to say something? I can hear you, ej. Okay, sonia, are you there?
Speaker 3:Okay, we can hear you now.
Speaker 1:But I can't see you. Let me pause it.
Speaker 2:Really, I can't see you. Let me pause it. Really, I can see it, okay, okay.
Speaker 3:So I don't know where you stopped hearing what I was saying, but I think faith helped me adapt my faith process with the ideology of it's my cross, and I can carry it, but I'm not carrying it alone. And in this word, like God, where there is no way one door closes, another one opens. You know, when you watch the movie of, if you watch Sound of Music, you know when Maria was leaving the convent and she looked at the cross and she said when the Lord closes the door somewhere, he opens the window. So the doors of every other thing felt closed in my life with lupus, but somehow he opened the windows, like church. Okay, how about starting a youth group? Okay, let's start a youth.
Speaker 3:Once a week I would go work with children, do activities with them. That was me functioning. Everyone that was doing something, helping, volunteering, and they had good jobs social worker, teacher, blah, blah, blah. Everyone was doing. I was the only one that was what do you do? I have lupus. Lupus was my profession. However, those little seeds are what has been planted to where I am now.
Speaker 3:If I look back at those days, I would never think of those things I would do for those young kids was just transforming my mind, like, okay, you can do better Something, something happened. Okay, it gives you that push, gives you that what would I call it? Positivity, gives you that optimism. Okay, maybe I can try this. Maybe, no matter how little, when the door closes in one end, that doesn't mean life stops. Life might stop for a while. It might pause for a while. Give it time. Somewhere a light will come and you follow that light and many times it leads in the direction that you never thought, you'd never think. In your world there's beings that, oh, this is the path I would go. No, when I moved here, I was thinking, oh, hr, I want to make human resources. You know this. But when life stopped, I didn't have any dream. And that's when it starts. When you've lost everything, you're back to square one. That's when you start climbing again. So my faith, my family were very instrumental in my mindset, you know it was very helpful in my mindset.
Speaker 1:And you missed one out your ability to give. You gave those children your time. You gave them your time and as you were giving them their time, as you were building them, god was also building you. In a way, they were also building you as well, and it's actually one of the five keys of well-being given. It's actually one of them. Thank you so much, ij. Thank you so much, safina. You know, like I always say in this podcast, we always share.
Speaker 1:I know you've already given in the other one, so you better start thinking of something else. Okay, what are the things that you do, safina, to ensure that, regardless whether life is life in, these are the things that help you to keep thriving authentically?
Speaker 2:I'm speaking about myself now.
Speaker 2:Yes, oh god, I love to dance love dancing and I love to be a bit silly, cracking, cracking jokes, so I like to be around people that can take my jokes. It is one person that I would tease myself first and just laugh about issues, even when I'm in pain sometimes. I just I like to make light of it sometimes, so it's easier for me, even though I'm really in pain. Yeah, so I do that. Yeah, what else? Hmm, light of it sometimes, so it's easier for me, even though I'm really in pain.
Speaker 2:Yeah, so I do that. Yeah, what else? Hmm, exercising shopping I love. Sometimes I tell myself I think they've buried my kidneys in stores because I always would just want to go, even when I'm not really buying anything, even with window shopping. I just like to see things look around, stuff like that. Yeah. So, basically some things I like doing, but dancing is number one oh, that is so lovely fantastic dancer. I don't even think that you see she's good.
Speaker 1:No, but she's very good in dancing she's been modest, right she's been modest three dance steps which I hold so dearly.
Speaker 2:Yes, for some reason it keeps me going. I find myself just dancing if I just listen to music and I'm happy. It makes me truly happy, deep down yeah, wow.
Speaker 1:Thank you so much for sharing. We are going to dip into yours again, so share us a new one the last time I can remember.
Speaker 3:I love a good laugh. Like I, I like to laugh and laugh at myself, just laugh at things. You know, I think laughter heals, laughter does a lot of things when you have people around you that make you laugh. I like to make jokes, you know. So if I have someone that makes me laugh, I'm really really, I'm really happy. So I have a group of people that will just just come let's laugh you know, let me make you laugh. Make me laugh, or you know. That's great, and I like sleep.
Speaker 2:Oh, yes, sleep.
Speaker 3:I love sleep. I don't get enough of it at night. During the day it's just my go-to. I have my moments where I'm active, like exercise active. I don't register gyms because I just waste my money. I can go one week and the next six months I've not gone. Laughter, sleep, good food hey, you've made my day.
Speaker 1:I forgot to mention one taking photographs of your food.
Speaker 3:Taking photographs of my food. Yes, I love that. Just taking photographs. You know that I'm having fun.
Speaker 1:That's savouring the moment, even though the food is gone into her stomach, but she's still savouring the food, right? Thank you so much, ladies. I am very sure we are going to work together to give you some tips on how to say that girlfriend, go for me, so the people can listen and take action and support in one way or the other, the best way we can. I will just keep sharing it in the episode to see how that is going to. To pick up, um, for for you guys, I really do hope things pick up. I know there are loads of good people out there. There are loads of kind people out there that are not waiting for just the government to help, but they just want to help fellow human beings like themselves.
Speaker 1:Thank you so much, safinat. Thank you IJ for coming. Thank you everyone for listening. For those of you that have been liking, we can see the following on youtube is increasing gradually um, if you can share with people and if any of whatever we've shared has triggered you, please do reach out to see our best and we can support you. If you have questions for us, questions for safinat or ij, please just send it to us. Like, like, like, like.