I Live With MS But You Cannot See It & here's why

What if the hardest battles are the ones no one can see? Multiple sclerosis does not announce itself. You cannot see numbness. You cannot see fatigue. You cannot see what is slowly slipping away. At 30, Shruti Gatte felt tingling in her feet that became burning pain and numbness that did not go away. Years later, she was diagnosed with MS.

Yeah.

In her book, My Invisible Battle, Shruti shares what it costs to lose independence How her MS progressed, and how she rebuilt strength when her body changed. Today, she shares what invisible illness really looks like. Welcome, Shruti. It's so good to have you on the show.

Hey, thank you. Thanks, Rita.

I've known two other people with multiple sclerosis.

Okay.

And it really does just affect everything, doesn't it? You've said that MS is a—it's like a war that you cannot see. What does that feel like day to day?

It is, it is an invisible illness. You can't see that. You can see fever, you can see cold symptoms, you can see everything else, infection symptoms, but you cannot see multiple sclerosis symptoms. And all the patient has to do is go on handling the symptoms, go on taking treatment medicines to combat with the symptoms. And that's all one can do. There is nothing more that any patient or doctor can do to that. Yeah. So that's what I meant with invisible battle. That's, that is the battle, survival battle with this autoimmune illness that is invisible. One cannot see that.

In the very early days, you write about the very early days when you had all your symptoms, but the doctors didn't have answers. How did that make you feel?

It felt— I mean, I was devastated. I was confused. And I could see even the doctors and the medical team, they were confused because not much research has been done on this. So it is not a very common illness that you see everywhere around, like any normal symptom. You take a paracetamol and you are okay. It's not about that. So it's that even the doctors were figuring out Oh, because MS is different for every patient. Even if they had 10 patients, they had 10 different symptoms that they didn't know about. So that is the, that is the most disturbing thing with MS. So that's what I was going through in my initial days, uh, just figuring out things, the symptoms and how this illness will take me ahead.

I know the person who— the person who I know got it at 62, but you've got it at 30. Is that considered young to be getting multiple— let's call it MS, so much easier— at 30? Is that young?

Yes, quite young. My, my kids were— one of my daughters was a toddler back then. Now she is a teenager, but she was a toddler back then. So, I mean, I was figuring out motherhood, I was figuring out my kids, their schools, and even I was working then. So my work-life balance, my career, was figuring out things, lots of things, and then this cropped up.

Do you have any idea how this would have started for you? Like, you mentioned it's autoimmunity. So did you have any other sort of earlier symptoms around that autoimmunity that led to this?

No other symptom of any illness at all. They say that this can happen because of genetic factors. They say this can happen because of your bad lifestyle. This can happen because of, uh, you know, because your habits are not right. But I couldn't actually even— not, not just I, even the doctors couldn't figure out Why can anyone get this? Because when they do an MRI scan is the only way you can find this out. And when they do the MRI scan, they they they don't know why why did the nerves got damaged all of a sudden.

So is the MRI scan is that like a full body scan or is that the scan of the brain?

Depends depends. Like for me, it was brain and spinal cord. But it depends. The doctor will tell which part of your body needs the MRI scan.

Tell us so people can understand, you know, if they know someone who's got MS and/or if they have done research because they're starting to feel like there may be something for them. What were your early symptoms?

My early symptoms were tingling in my feet I mean, that was relapsing-remitting back then. So I used to get yearly relapses, relapse only once in a year during summers. I used to get relapses. So I had MS only once in a year. But later on it progressed to a progressive, secondary progressive variety. And there the symptoms were just, I mean, they're there, residual symptoms. They didn't come and go. They were just there with me always.

We're talking more than just pins and needles, are we?

Yes, of course. I mean, pins and needles in my case, of course, in every case there are different symptoms. Yes, in my case, pins and needles were just the start of it, and they are still there.

And you said that you're, you're now, it's progressed to the point after a while that you're in a wheelchair now.

Yeah.

How did you cope? Because the biggest thing around these things is all, it's not just the physical. But it's also the emotional. So how did you cope emotionally losing that sort of independence, and what was the hardest sort of adjustment for you?

I kept telling myself, do only things which— where you can help on. If I am helpless about something, if I— there is, there is no way I can do anything right, then what's the point in cribbing over it? What's the point in crying over it? Rather, go ahead and find ways to do it In a better way. So that's what I did. Okay, wheelchair, wheelchair, fine, no problem. Let me— at least that is kind of independence that I got. At least put, uh, sit on the wheelchair and go to places where at least you can go and not just lying on the bed doing nothing.

You definitely have a mindset of resilience to look at what, what is possible and not just wallow in what isn't.

Exactly.

But you also, you also spoke about, um, the grief that you experience, not just for your health, but for the person that you once were. How did you move through that grief?

There was no point in crying over that grief. What, what would help was finding ways out, finding alternatives that will help me to come out of that grief. And I will come out of the grief Only if I find good alternatives to— for survival and to make my life better. That's what I did. I found doctors, I found therapists that those will help me, help me with the exercises, help me with treatment, uh, with doctors that will help me find out any treatment possible. So that's what I did. I didn't stay at one place and kept crying.

And as you said, you found alternatives.

Yes, of course, of course. Ayurvedic treatment for which I went to Kerala—that was also part of one of the alternatives.

That was that. That was that's now we were having a discussion about that. Could you say it again? Because that's actually a city in the south of India. Yes, yes.

That Kerala is a city in the south of India. It's a state in the south of India where they had where I went where they had Ayurvedic. Treatment. Ayurvedic? Yeah, yeah, Ayurvedic. That is the— and it was part of the therapy and medication therapies, uh, stress relief. So that's what they helped me about. And after coming back, I again went to my neurologist, and then he prescribed, uh, immunosuppressant for suppressing my immunity, because this illness is all about hyper Immunity disorder. So what they did was to suppress my immunity. As as they found out my immunity is hyperactive, so they suppressed it. They were doing all this while when while in COVID too. I think I have mentioned this in my book that even in COVID they all they were doing is suppressing my immunity, whereas everybody else was enhancing their immunity, but I was suppressing it to help me with the symptoms of MS. Did you find that that was successful? Uh, in bits and pieces, yes and no, both. Some symptoms it was helping a bit, some symptoms were not, were not budging at all.

It's definitely not a one-size-fits-all type of condition, and it's so, so personal. It's obviously the symptoms are so unique to each person.

Yes. One medication does not apply to all patients, and one symptom is not what all patients experience. So every for every lock there's a different key that no one knows about.

Exactly, and that's why discovery going to find. That's why I love it that you did go to India and you tried this Ayurvedic treatment. Can we go a little bit further into that of? What you did— and because that takes a lot of, a lot of courage as well, to know that you've got this condition, uh, to go, like you said, to get over the grief and then to find the courage to actually fly to— well, it is your home country, but another country— and start seeking out an alternative to the medical system. What exactly did they do for you? What did they provide? What sort of foods Or treatments or lifestyle? What did they do for you?

This treatment included therapies, all oil therapies, Ayurvedic oils, uh, all that therapies, vegan food, all the South Indian food, vegan food, clean air. The air is very clean there. Good air, good food, and good therapy. That's what they are all about.

And the therapy, do you mean Physical?

Yes, of course. So oil therapy, oil massage, and the medicines— they, they gave some powders, medicinal powders to take.

Interesting. And the oil massages, that sounds fascinating. Was that to give relief to your muscles or to make sure that they remained supple?

Not just relief to the muscles. Those oils that they gave, those oils had some specific medicines in them. Once you put them on your skin, they, they percolate through the skin. And massage, massage was just a part of it, and the main intention was to put the oil through the skin because skin is the most largest muscle in largest part in our body. Everyone knows. So through the Skin, the medicinal oil, the medicine used to go into your body.

So when you say the medicine, I assume it's herbal.

Yes, of course.

What, what's in that oil? What kind of herbal treatment do they do?

There is a list of herbs that are in it. I'm not sure about that.

And this actually— so it's not— we're not talking just about muscle relief. We're talking, is it, is it doing what? Is it affecting the immune system?

Yes, it is affecting the nerves mainly, because what happens is in MS, the brain gives signals to the nerves, but the nerves can't take it because they are damaged. So what these oils do is feed the nerves.

Overall, what was your experience like emotionally and physically from this, from going to India and having this experience?

Experience was very good. I was alone there, away from my family, my kids. I mean, it was a break, a welcome break for sure, and also a hope that, okay, this, this alternative that I'm taking would help me get out of my symptoms that I have been going through for all this while. So a hope, I mean, that's what made me continue doing that. But the experience was good.

Great. This is what we hope these stories do for our audience, is to encourage them to go beyond what they think is possible for them and, and actually go and discover new therapies beyond what their either functional or, you know, traditional doctor tells them is possible.

Yes. And not losing hope and not giving up is the biggest thing that we can do in this illness. No point in sulking over the grief. Rather, go ahead and not give up and fight it out. That's what I'm doing.

You spoke about in your book, um, the importance of a positive mindset, but also faith, having faith.

Faith in— I mean, faith differs from time to time. Faith in the doctors, that's what hope is all about. If you have strong faith, you— your hope, it's And that's what kept me going. Faith on the doctors who treat me, faith on the therapists, faith on my family, faith all around. So that's what hope is all about.

Absolutely. Is there— was there any particular mindset practice that you did daily at home to help you?

I mean, just breathwork. That's it.

Oh, breathwork. I was just at a retreat doing breathwork. It really does help.

And that also helped in combating with the stress. And stress is the enemy of MS. I mean, the more stress, the symptoms, uh, heap up.

Oh, they flare up with stress?

Yes, yes. So, so relieve yourself of the stress and you have handled your symptoms.

When you are stressed and your symptoms flare, what kind of What symptoms do you feel more than normal when you're not stressed? Is there anything in particular?

All the symptoms that I'm going through, all kinds of symptoms, they just increase because of the stress.

In intensity?

Yes, yes, intensity.

How do you balance traditional and modern approaches to your treatment?

It depends on time to time. So now when I was taking Ayurvedic I was not looking at the tradition, this thing at all, like modern approach at all. But when I went— when I came back from Kerala, I totally went to my neurologist and started taking the immunosuppressant. I mean, I had to just make sections. Okay, now I'm here, do this. When I go back, do that. I mean, just make sections about it.

Yeah. Oh, so you didn't do it Simultaneously? You didn't do it together?

No, no.

Oh, you did it—

That won't help doing it together. It would be just haphazard hotspots all in all that time.

Excellent. And that gives you that overall balance. Did you find that one was actually a little bit more effective than the other, or are they just so different you can't compare them?

Exactly. It's so different you can't compare. And, and if one Treatment works today. No guarantee that with the same treatment will work for the same symptom tomorrow. It goes on changing, so you can't make a pattern out of it. अरे वो इस से अच्छा है। Yeah, and and the pattern with with me might not be the same with the pattern with other MS patient. Other MS patient will have altogether different symptoms, altogether different medicines. Treatment and, uh, some other pattern.

People tend to plan their lives, they plan their future, they have, you might, next 5-year goals or whatever. How do you see that in your life? How do you see tomorrow, one month, one year from here?

Take one day at a time. Yeah, keep small goals. I'm happy if I'm able to, you know, uh, with a lesser fatigue today, I'm happy. Yes, one day at a time, achieve smaller goals at a time. That's what helps me.

And is the fatigue— fatigue is, is something quite debilitating with MS, is it?

Yes, of course, it is one of the major symptoms.

So do you work?

Not right now, not right now.

Yeah, it's too much.

Yeah.

So when you talk about the fatigue, because you're in a wheelchair, so it's not The same as standing around type of fatigue.

Fatigue is not only physical. It's not just about physical. That's a totally misconception. Fatigue is when you are tired. No, it's not that. Fatigue is, I mean, even if you are sitting whole day, you may get fatigued because fatigue is mental, emotional, and physical.

The fatigue of actually even just keeping it all together when you have a chronic illness.

Yes, of course. Just coordinating 10 things at a time is also fatiguing.

Yes. And is— have you developed a bit of a skill or a way of managing that at all?

Yes, of course, because I had no option.

So what do you do?

That's what— one thing at a time. Keep cool, don't get too much overwhelmed, and don't get too much stressed, tensed about it. Acceptance is the best medicine. Accept that it's okay if you are not able to do it today. It's okay, we'll try again tomorrow.

Yeah, that's such a great positive attitude, and you obviously have a good support system around you. That's important.

Yes, of course.

This has been a very interesting— Shruti, a very interesting snapshot into the life of having MS and what The limitations, but there may be limitations as in physically, but there's no limitations emotionally and mentally for you.

Exactly, yes. And, and that's why— that's what made me write this book, because for a newly diagnosed patient, he or she is totally unaware what this holds for the rest of my life. Either he or she doesn't know it at all. Same, I went When I was newly diagnosed, I went through all these things. I, I started from scratch. I reinvented the wheel, of course, for me. But then I don't want anyone else to do it. So I thought, let me be a guiding light to others, at least, even if no one guided me. But I can be that one, that thing to others.

Guiding light is, is the right word there, because before we go, I really would like to know From the beginning, when I asked you about the doctors had no diagnosis for you and you had all these symptoms and they didn't know what it was or even believed you, how did you advocate for yourself? How did— what did you say to them to convince them, I want more tests, or, oh, you know, I want this looked at more, to really— so you weren't just, uh, it's all in your head, we can't see it?

That is a very common thing to say. To such patients, I'll say that never give up, don't lose hope. That's what will help you go ahead.

And was there any particular questions that you asked the medical system, the doctors or whatever, to get them to actually go further and actually do these tests for you?

The only thing that I used to keep asking was, when will we get a permanent cure for this? But for that, they didn't have any answer.

Absolutely. And they would never give you that type of answer anyway. They can't. But you know what, the, the courageous thing is, is that you didn't give up. You fought for yourself. You advocated for yourself. You have an amazing mindset, which is just beautiful. What do you hope readers will take away from your book, My Invisible Battle?

Uh, with my book, I, I want to I want the readers to remember me for my resilience, hope, and persistence, and not for the pain and suffering. Pain and suffering is something that you can get over with, but hope and faith you cannot develop. You have to have within you.

You do. And it is— it's what's obviously getting you through this situation, through your condition. And you know, here you are, you've written a book, you're coming onto podcasts, you're getting yourself out there. There's no stopping you.

I mean, not at all. Only MS, only MS can, but I'm not letting it do that.

That's exactly right. You're, you're winning. You're the one winning.

Yes, of course.

That's fantastic, Shruti. It's been so lovely speaking with you.

Yeah, it was lovely Speaking to you too. Thank you. Thanks a lot for inviting me here.

You're welcome, and all the best with your journey with MS.

Thank you. Thank you.