S03E15 – Multiple Sclerosis (MS) – Warrior – Rana

00:06
Ali Khawaja
Hey, everybody. Welcome back. Thanks for listening in today. I’ve got two very interesting guests. We’re going to split it up into two podcast episodes for you guys. It’s a topic that is seldom discussed. And, you know, a lot of people that I ever have, you know, brought it up with don’t really understand what’s going on. So we’ve got someone in the studio today. I’m going to let her introduce herself, and then we’ll jump right into it.

00:35
Rana
My name is Rena. I’m lebanese, and I’ve been living in the UAE for the past 20 years. I was diagnosed with multiple sclerosis in 2016, and I’ve been living with it since then. I’m glad I’m here trying to raise awareness.

00:59
Ali Khawaja
Thank you for being here. This is. Raising awareness is literally the reason for the existence of my organization.

01:06
Rana
It’s good to be here.

01:07
Ali Khawaja
Thank you. I appreciate. It takes a lot of bravery to step up. It takes a lot to be able to come into the public space and to speak about things. We were just on our way back from coffee. We were talking about how stigmatized mental health and wellness and any of these issues are. And over the last four years, I’ve talked to thousands of people at this point, and everyone has almost near the same story with slight different flavor, but it’s all heavily stigma based. We don’t talk about it because there’s shame. We don’t talk about it because it’s taboo. We don’t talk about it because of.

01:43
Rana
But also the stigma comes from the lack of awareness.

01:46
Ali Khawaja
Agreed. So our purpose of our organization is to do things like this, have conversations, have dialogues, and as soon as that awareness starts to happen, and they’re like, oh, okay, it’s not world ending. Oh, I should feel embarrassed for feeling embarrassed about it. Once we get to that stage, that’s when I think conversations start to happen at the dinner table at home. Most families don’t have these conversations. I’m not going to lie. I’m a little bit excited to talk to your mom about this. That represents a different generation, and most times we have that generational gap that creates a problem. So just for the audience who don’t know, can you tell us very briefly in summation what MS is?

02:34
Rana
Okay, so multiple sclerosis is basically an autoimmune disease, all right? It’s a condition that affects your brain and your spinal cord, and you get lesions, and hence, there’s a lot of chance for disability, okay? It affects your movement, it affects your vision, it affects the balance. It also affects your mental health and emotional health. So your mood, and it’s a lifelong condition. There’s no cure yet.

03:19
Ali Khawaja
Thank you. Thank you for sharing. Can you tell me a little bit about when you were first diagnosed?

03:25
Rana
All right, here’s the thing. I think I am one of the lucky ones who got diagnosed maybe in a couple of weeks, because when I first got the attack, or what we call attack, it was a major one, was one that affected my vision, my balance. I just woke up one day and I felt like the earth is turning. And at first they told me it was my inner ear, and they sent me home with some meds for that. I wasn’t getting better. And then I felt some sort of numbness. Numbness is one of the symptoms on my left side. And I started smiling only one side. So I remember telling my friend who came to visit me, I think it’s my nervous system. So a few days later, I couldn’t see anymore. I couldn’t walk properly.

04:29
Rana
I went to see a neurologist, and he did tell me it’s either a nasty virus or Ms. Do you know what MS is? I kind of knew what MS is only because we had a neighbor growing up that suffered from MS. And unfortunately, there weren’t any breakthroughs when it came to meds then. So he passed away in his 40s. Once I did the MRI, they saw the three lesions. I was diagnosed here, and they wanted to start treatment immediately. But I remember I told him, I asked him if I could go home. I felt like I needed to be with my family, and that’s what happened. I went home. They received me on a wheelchair at the airport, and I got the same diagnosis in Lebanon as well. And I started treatment immediately. I don’t think it really hits you.

05:46
Rana
I mean, at the beginning, you just focus on getting better. Like, I wanted to gain my balance back. I wanted to walk again. I wanted to be able to see again. It hits you once you start getting better, actually, that it’s something that you have to live with for the rest of your life, and that’s when you somehow begin to spiral, go to some sort of dark places. But I think what really kept me from completely, you know, hitting rock bottom was motherhood. I didn’t understand my mood shifts. I didn’t understand when I took some distance. I’m like, who is this person? My mood keeps changing. And I got very emotional very quickly. So I remember my son. He had a school trip. He went to Canada and came back home with a mood ring as a gift. I don’t know.

07:17
Rana
When I received it, I’m like, okay, I had to do something. That’s when it hit me that I had to do something. And so I started researching. I reached out to a person who does research on the brain, and I’m like, I’m not myself. Is this normal? Is this something chemical going on in the brain? I feel I’m depressed, but I don’t know if I’m depressed. And then he answered, he’s like, yes, it’s something chemical in your brain. And Ms. Does that multiple sclerosis? Actually, studies have shown that those with multiple sclerosis suffer from clinical depression more than any other disease, actually, because of the lesions in the brains. They affect areas that are maybe responsible for your emotions, for your behavior. So there is something going on, and depression is not something that you can fix with willpower or determination.

08:44
Rana
I had to find help, and help obviously came by speaking to a therapist, starting to exercise. And I needed tools. I needed tools to deal with my depression. And for a long time, I was on medication to be able to handle the depression.

09:11
Ali Khawaja
Talk to me. Thank you for sharing. And this is very important to understand that everybody walks around thinking it’s all good. It’s going to be somebody else who’s going to have whatever the issues are with the world, not me. And then when it hits home, it hits hard. And this is very similar narrative to me talking to many other friends who’ve had life changing things happen to them. So thank you for sharing on that. How did you find the impact on the family?

09:45
Rana
My family was extremely still. I always talk about this because from a moment, one. So when went to see the doctor in Lebanon, I have three brothers, and obviously mom and dad. And so went into his clinic, and he’s like, but there are no places for everybody to sit. And I remember my brothers were like, it’s okay, we’ll stand up. So they were there immediately. I’m very blessed with support, be it from friends or family. And like I told you, I think ultimately, but ultimately, you have to find the strength in you, okay? No matter how much support you have, it’s excellent, but you have to find the strength in you to be able to seek out help. It was never easy for me to ask for help, by the way, I learned that. I mean, I’m still learning it. And yes, motherhood.

10:59
Rana
I had to tell my children that no matter what life throws at you take it in your stride.

11:04
Ali Khawaja
How old were your children then.

11:08
Rana
Well, they’re 1917 and twelve now and seven years ago. Yeah. So that makes the. The eldest was maybe 1213.

11:19
Ali Khawaja
Wow.

11:20
Rana
Yeah.

11:20
Ali Khawaja
That’s not easy.

11:22
Rana
No, that’s not easy.

11:23
Ali Khawaja
Kids don’t understand things.

11:25
Rana
They don’t. And I didn’t want them to understand everything.

11:28
Ali Khawaja
We want to protect them. That’s just natural.

11:30
Rana
Yes. And it’s not easy because one of the symptoms of multiple sclerosis is fatigue. And you’re tired, and your tired is not like my tired. You could sleep for 2 hours, wake up refreshed. I could sleep the whole day and still wake up tired. I go to work sometimes on lunch break. I have to go take a nap in the car and then come back to finish the day. It’s that kind of tired. So when the kids ask you, I want you to play with me, and I’m just like, exhausted. I can’t. But there’s always an upside to things. First, their bond became much stronger because they started talking to each other, speaking to each other, playing with each other more.

12:23
Rana
And my little one, whenever she asked me to come and play with her, and then I couldn’t, what I could hear is that she was playing on her own with her dolls, her made up conversations. So there’s always an upside to things.

12:43
Ali Khawaja
I think it’s hard. I agree with you. I think it’s very hard to. And hard to see. I remember when my kids were young, I would come home burned out, totally exhausted, to the point that I’m sitting on the couch thinking, do I have enough energy to make it to the bedroom? I think to sleep, or should I just sleep here at least maybe I’ll take a three hour nap and then have enough energy to get upstairs. And I remember my kids used to come running it, running in whether by, you know, between three and, oh, baba, we want to play this. And baba, guess what? Baba gets up. No matter how exhausted, you push yourself.

13:21
Ali Khawaja
And then, like you said, and I think it was very important, what you said is that my tired and you’re tired, and my exhausted and you’re exhausted are very different. I can still push and do something, and I can’t even begin to imagine if I wasn’t able to do that. That’s just so hard for me to even think about that. Wait a second. And I remember when the kids were very small, I have to, like, we’re walking in the mall, they want to sit on my shoulder. Then they started getting big, and my son started getting big. Like all that hemp. He’s already super big. And Baba, we got to sit. And I had chronic back a pain issues. I don’t care. My mom and dad would be walking in the mall with me. They’re like, what are you doing?

14:03
Ali Khawaja
You’re going to be in pain for the next three weeks. They are perfectly fine to walk.

14:10
Rana
No.

14:12
Ali Khawaja
So it’s hard, I think, from the perspective of a parent, if you’ve got young ones, it’s even hard to explain to them. They’re too young to even properly understand.

14:22
Rana
No. Or process.

14:23
Ali Khawaja
Or process it.

14:24
Rana
Yeah.

14:26
Ali Khawaja
I think you’re blessed. You had family support. A lot of people don’t talk to me a little bit about any stigma that you faced.

14:36
Rana
To be honest. For me personally, the first thing I tell you is I have Ms. I’ve never felt like I have to hide it or like I was ashamed or anything at all. However, I understand why a lot of people can’t or won’t admit they are sick because there is a lack of awareness. I go back to that, for example, a multiple sclerosis hits you between the ages of 18 and 35. Okay, some people are still probably not married. They’re not married. They haven’t found a job yet. So all of this affects how people see you. If they find out that she has multiple sclerosis, then they might think she can’t get pregnant, but she can.

15:38
Rana
Actually, it’s just the pregnancies need to be more or less a little bit planned, but she can live absolutely as much as normal life as possible and have kids and have a family. So there’s lack of awareness about this at the workplace. A lot of people don’t say they suffer from something, could be Ms or anything else. Just because whoever they work for might think they might be less productive or they might ask for more sick days.

16:10
Ali Khawaja
Or sick leave, we can’t promote them. Are they going to be able to handle the load? All of that?

16:16
Rana
Exactly. Support needs to extend beyond family and friends. Okay. I wish to see more support at work. For people with chronic illnesses or specific conditions. They should be allowed to take more, perhaps sick leave or sick days. See, the more we have these conversations and then the less people would feel. Perhaps they would become more open about discussing these things and reaching out and asking for help and asking for support. It matters because we all face challenges. We all have different kinds of us, and it matters that we need to look after each other. Right. As a society to be able to grow, to flourish, to strive, to thrive. So the support needs to be extended beyond just family and friend.

17:31
Ali Khawaja
I’m going to switch tangents a little bit. I want you to share with me advice that you would have for someone who just got diagnosed and found out. What would you want them to know? What would you have wanted someone to tell you when you first got diagnosed?

17:49
Rana
Don’t be scared. It’s very scary and it can get quite isolating. The first thing I would say is, don’t be scared. Really. You’ll have extremely good days where you even forget to take your meds because they’re such good days and it’s not something you cannot manage. Especially, like I said, there have been breakthroughs in meds for MS in the last ten years. So we’re lucky in that. And don’t be afraid to ask for help. Keep moving, keep pushing. Yeah. Don’t give up. Basically, don’t give up. It’s really not the end of life or the world. It could be perhaps the end of life as you knew it, but it doesn’t mean certain areas in our life are not going to become better. Ms has made me kinder, more empathetic. I pay more attention to little details.

19:10
Rana
Someone once asked me, I think, when do you feel happy or are you ever happy after you got diagnosed? Emeka? I’m happy every day. Every day there are moments of happy. Plus, happiness is not exactly. It’s fleeting, so you have to appreciate the moments.

19:31
Ali Khawaja
That’s good. What advice would you have for organizations? Like for companies and organizations so they’re better apt to deal with people who are dealing with chronic illnesses?

19:49
Rana
I don’t know. But the reasonable thing would be that once you’re aware that one of your employees are perhaps sick or suffer from a chronic illness, that there’ll be.

20:06
Ali Khawaja
I.

20:06
Rana
Don’T know, special, specific, perhaps, you know, rules or, you know, that would allow them to actually, you know, be more at ease in order for them to be more productive. Because they can be productive. Extremely productive.

20:26
Ali Khawaja
Just some flexibility.

20:28
Rana
Yes, perhaps that’s reasonable.

20:31
Ali Khawaja
That’s not an impossible ask. That’s a very reasonable ask. Given all the conversations I’ve had over the years. More often than not. Not always, but more often than not, I’ve found that the organizations are okay to be flexible, but I found that the people are too stigmatized to ask. So I think there needs to be a little bit of push and pull from both sides for workplace things to start improving and start changing.

21:01
Rana
Of course, if we’re going to keep thinking that this is a weakness, yes. And we’re in that frame of mind, then we’re not going to talk about it.

21:16
Ali Khawaja
What’s your advice for family? What’s your advice for family and friends who find out that a loved one has been diagnosed with something?

21:27
Rana
Look, I mean, I can’t imagine how they felt. Be understanding, because after a while, once we start looking better and feeling a little bit better, maybe they forget sometimes that we still have it. A lot of the times, perhaps they don’t understand why we cancel on things or why we can’t make things or why we don’t want to go out today. So it’s just that also be more.

22:00
Ali Khawaja
Flexible to hold some space. Hold more space perhaps.

22:03
Rana
Yes.

22:04
Ali Khawaja
Okay. That’s also a fair ask. And I think what we initially discussed is the more awareness and education there is.

22:11
Rana
Sure.

22:11
Ali Khawaja
In all of these facets, this will help normalize discussions. This will, like you literally just said now, will help people understand why certain behaviors are the way they are, why you canceled on something or why you’re just not feeling up to something. And I like what you said a little while ago about just because it looks like it’s a good day doesn’t mean it’s gone way. It just means it’s a good day, but it’s still there. I think. Honest, that’s a perspective I didn’t think about. But you’re right.

22:42
Rana
You’re very, see, it’s an invisible illness and you don’t want to be constantly walking and talking about it, but at least for the people that know about, to be a little bit more flexible. Yeah. And understand.

23:01
Ali Khawaja
I like that. This has been good conversation. This has been good conversation. Anything you’d like to tell the listeners how they can get better informed, where they can go. Give me a plug. Give me.

23:18
Rana
I’m so glad. Finally, we have a national Ms society in the UAE and they’re working hard on not only raising awareness but also pushing in more towards research and how we can actually, because this is what we want ultimately, to find a cure. So that’s excellent. Like I said, multiple sclerosis not only affects you physically, but also mentally and emotionally. So make sure you’re working on all of those together. There’s no shame. There’s no shame in saying, I am depressed, I need help. There’s absolutely no shame in that. The only way to move forward or to actually feel better is to actually do something about it or talk about it and process it with others. So, yes, that’s it, I think.

24:18
Ali Khawaja
Thank you so much for sharing. Thank you. This has been great.

24:20
Rana
Thank you for having me.

24:22
Ali Khawaja
Real warrior. Appreciate it.

24:23
Rana
Thank you.

24:24
Ali Khawaja
Really appreciate it.

24:25
Rana
Thanks, Fanny.

24:25
Ali Khawaja
I’m inspired. I’m very inspired. I’m proud of you. Thank you, ladies and gentlemen. Not all heroes wear capes. We got one right here.

24:34
Rana
Thank you.

24:34
Ali Khawaja
Thank you very much for listening in. In the text below of whatever you’re watching this on, I will make sure to include links and resources for more information and how you can reach out. Thank you very much again.