Living With A 24×7 Painful & Incurable Condition, Arushi Hasn’t Given Up On Her Dreams
- IWB Post
- December 6, 2017
“My life was hit by an earthquake of its own; so imagine the tsunami level of the ripple effect it has caused. I am taking baby steps at maintaining my balance on the tectonic shift that this earthquake has created. I plan to tidbits of my life’s chaos and in turn hope to cause at the very least a slight positive ripple effect in some distant space of my own,” 28-year-old Arushi writes on her personal blog, ‘Photosynthesis,’ while explaining the ‘Butterfly effect.’
The earthquake she talks about in her blog is Fibromyalgia. According to the National Fibromyalgia Association, an estimated 3% to 6% of the world’s population suffers from the condition which is roughly about 450 million people.
Fibromyalgia is a painful musculoskeletal disease characterized by widespread muscle pain, oversensitivity to common pain, extreme fatigue and sleep, mood and memory problems. As Arushi explains me, every muscle, every joint, and every nerve in the body aches. It’s like an unbearable throbbing or stabbing sensation, sometimes, an intense burning sensation, the other times.
When we go to meet Arushi at her house, she greets us and let us in her bedroom, which is filled with a variety of crafts on the walls and doors. She tells me, “I love creating things. Everything you see here, I have done myself.”
“Before you came, I was applying ice packs to relieve the pain and I also removed the crepe bandages from my hand. Otherwise, I have around 10-15 crepe bandages wrapped on my body at all times. I have like this big box of crepe with me and 3-4 hours of my day goes in removing and putting on these bandages.”
She folds up her leggings and shows me 2-3 crepe bandages rolled over each other tightly, covering her legs.
Yes, I’m a bit unsure how to take the conversation forward and I’m really nervous, but Arushi is smiling at me and seeks permission to lie down.
“I cannot stand comfortably for more than 15 mins or 30 mins at a stretch. And, since the time I have had Fibromyalgia, which is like 5 years almost, I haven’t sat, because it all started with my right hip. Even doctors say that amongst all patients with Fibromyalgia, they have observed this condition only with me. So, either I can lie down on my stomach or I can stand.”
Before she talks about her life with Fibromyalgia, which she calls Monster F, (Read about it here on her blog), I insist her to tell me about her life before it. I really want to understand her personality and her dreams.
Before Monster F’s entry: Living the Dream Life
Born and brought up in Jaipur, Arushi was passionate about sports and was fascinated with the work culture.
“Love for sports runs in my family. My mom and younger brother are both national level badminton players and golfers. However, I wasn’t much of a solo sports player. I liked team sports. You name it and I have played it. In school, I took part in almost all sports tournament: cricket, handball, volleyball, basketball, sprints, etc. I also played handball at the national level and our team emerged as the CBSE National Champion for multiple years,” shares Arushi.
“Apart from that, I also did a summer internship at Genpect, when I was in 11th just to get the feel of the work culture,” she adds.
After her 12th, Arushi went to the U.S. to study Marketing and HR. She recalls taking up summer internships during her vacations and says, “My first internship was at Coca-Cola. While, nowadays, most students take up summer internship, at that time, it wasn’t a common thing.”
She then confides in me the biggest regret she has till date.
“After my graduation, I had applied for the post of Product Manager in Google. Their interview process is really rigorous and grueling. After 10 various rounds of such interviews, I was amongst the last two candidates shortlisted for the post. However, I didn’t have the green card and the other person had, so, the job went to him. Ah, that would have completely changed my life.”
Nonetheless, Arushi came to India and started working with ESPN in their marketing department.
“I combined my two passions, Marketing, and Sports, and it never felt like work. I was managing the marketing for various events like FIFA World Cup, ICC World, Cup, etc., in India.”
“Though it’s a glamorous career, there’s a lot of back work that goes into it,” she continues. After working at ESPN for a year and a half, Arushi shifted to Bangalore and took up the Sports Marketing for Kingfisher.
“This was a dream come true for me! From managing IPL team sponsorships to promotions of first ever F1 race in India, I did it all and learned so much in such a limited time.”
Arushi also shares with me that she has a great aptitude to handle pressure and works best under chaos.
“In all my jobs, I was like thrown into deep water and yet, I could always manage the stress which is why I think I gained the experience that others don’t get even after years of being on the job.”
Arushi’s hardwork and dedication didn’t go unnoticed. She tells me how she got promoted in just under 6 months of her job in Kingfisher.
“The Brand Manager of Kingfisher Blue went on the maternity leave and I was asked to fill in the shoes. I became the youngest ever Brand Manager of Kingfisher.” Arushi was 22 at the time!
“I was at the peak of my career and I felt that I was on the right path,” sighs Arushi.
Monster F Enters: Confusion, Loneliness, & Helplessness creeps in, too
“It was in Jan 2012, one day, I had this bad pain in my hip. It continued for a few days and I would get tired easily. But again, my work schedule was so hectic and demanding that I didn’t get time to even do my laundry or buy groceries. So, I thought it must be due to this and even my colleagues advised me to take some time off and rest.”
“I even visited the physiotherapist and a few doctors and all of them said it must be a muscular spasm. However, the pain was getting so bad that in between meetings, I had to stand up often to relieve the pain and my colleagues found it really odd,” shares Arushi.
“Slowly, the sitting time started decreasing and the standing time increased. For the major part of my day at work, I would stand and do the work. I got so many tests and MRI’s done, and all came out fine. I went to so many doctors in Bangalore and in Jaipur, also, but no one could understand what’s going on,” adds Arushi and I can only imagine the inner turmoil she must have gone through at the time.
“I would come to Jaipur and try all the different therapies, medicines, acupuncture, homeopathy, physiotherapy, alternative therapies, and would go to different specialists, ortho, neuro, physio, etc. I even took counseling because a few doctors felt that, “it was just in my mind.” But, even the counselors said that I was perfectly fine and all our efforts to understand and alleviate the pain were going in vain.”
Arushi returned to Bangalore and resumed her work only to quit it after a month due to the worsening of her pain.
“I have always been rated 5-on-5 when it came to work and I couldn’t see myself not being able to give my cent percent to it due to my pain,” she explains with a grim smile.
Even after coming back to Jaipur, it was only after two and a half years, that she was able to get a proper diagnosis.
“For over two years, different doctors were suggesting different conditions and nothing was fitting my condition. Somewhere in mid-2014, I got a proper diagnosis and the doctor said that I had ‘localized’ Fibromyalgia which in their terms means that it will get better with time. After the diagnosis, I was relieved as I thought now that we have found out the problem, we can treat it.”
However, when I read about it, I found that there’s no cure for Fibromyalgia and it can only be managed.
“The pain never lessened and in fact, it kept spreading to other parts. Now, my every body part, muscle, joint, nerve, pains. Even as I am talking to you, I am feeling this excruciating pain like someone is putting needles into my skin. The doctors have characterized Fibro pain as just next to childbirth and I live with this pain 24×7.”
Arushi reveals that she stopped the medicines long ago as they were not helping her in any way. “Worldwide, there are only 3 medicines to manage the condition and its success rate is not even twenty percent. They have a lot more side effects and I have experienced it. I have taken as much as the 1800mg dosage of these medicines, per day and it didn’t help relieve my pain a bit.”
Arushi then tells me how Fibromyalgia has affected her social life and it’s heartbreaking.
“For initially 2 years after the diagnosis, I was confined to my room, my bed. For an outgoing, extrovert, always-busy-doing-something girl like me, I never thought of sitting idle without being able to do anything that a normal 20-something girl would do. But, what hit me harder or maybe equivalent to my condition was how people around me changed.”
“The number of friends who actually came up to me were none! These were friends I have grown up with and they all disappeared. Even the majority family members also distanced themselves from me. As I couldn’t go out or hang out somewhere outside, I would ask them to come home, but, they always had excuses ready,” Arushi confides in me and I’m a little surprised.
“Why the stigma?” I ask, to which she replies, “I think there are two reasons. One, Fibromyalgia is invisible, and because people can’t see it, they do not understand it. Second, people my age would like to hang out and go to parties to have fun, while, I couldn’t have fun that way anymore. ”
“Arey, my body might be acting weird and different, I’m still the same person. I still laugh at the same jokes, I still enjoy talking to people, I’m just a 20-something girl like any of you. Jayati, there were months that I was alone in my room, thinking about how to pass my time! Both my parents are working and my brother is studying in the U.S., so, during the day, I was all by myself. When I am going through so much physical pain, the loneliness, the isolation, only added to my emotional and mental trauma.”
“I don’t talk about my illness all the time. In fact, I would love to know how your day went, what’s going on in your lives. In fact, at the time, it would have been the only way to know the outside world as I couldn’t go out there. However, I was left alone to deal with everything and now when the doctors see me happy, they ask me, “Are you faking happiness?” and I smile and say, “Do I have another choice. Now I find joy in little things. Even if I get a nice food someday, I’ll be happy for the entire day,” she says with a contagious smile, making me smile, “Fake happiness till it becomes your state of being, right?!” I exclaim.
Arushi didn’t let the loneliness or the helplessness of her circumstances take away her spirit, courage, and hope for a better, shinier future and she credits it all to her family, especially her mother. “My father works in Delhi, and so, at home, my mother and me find ways to fight the Monster F, on a daily basis.”
“People ask me if I never had suicidal thoughts and are surprised to know that I haven’t. The reason I never get depressed or get negative is because of the bond we, as a family, share with each other. We have found our own ways to deal with Fibromyalgia and my mom keeps coming up with different ways to help me become more mobile and comfortable.”
Living Life with Monster F: The New Normal
Arushi shares that even after coming back to Jaipur, she knew she couldn’t be without work and therefore, 2 months after coming back, in 2013 itself, she started her own executive search company, Anekto.
“My family understood my passion for work and so, they helped me setup my own firm. Now, I have a few employees who work for me from home and we hold meetings via skype. We undertake executive searches. As this is more HR-oriented, I wasn’t getting that thrill of marketing which has always been my first love.”
Now, gradually, Arushi has diversified her business into marketing and provides consultancy services to other companies regarding their brand management, advertising, communication, digital marketing, promotional strategies, etc.
As far as her social life is concerned, Arushi says, “I now have a group of friends, who were earlier not close to me, and were just acquaintances or were complete strangers. They come over or I visit their homes. We have got our car modified in such a way that I can lie down and wherever I go, like in restaurants, or cafes, I seek permission and see if they have something where I can lie down. Of course, a lot of strangers give a disapproving glance, but, I don’t care. What would hurt me before was when a few of my friends were not willing to go with me because they were ‘embarrassed.’ Still, I’m always keen to go out, but unfortunately, very few people invite me because of my condition.”
“I go to the weddings, parties, etc. In fact, I recently danced at a wedding as I always wanted to and never got a chance. It was a really slow 1-minute couple song where I had limited moves, but I was so excited. However, going out and attending functions even for an hour or two takes a toll on me the next few days. It’s a trade-off that I do.”
She shows us the arts and crafts that she does and explains, “Whenever I get up, I need to create something. Of course, it takes a lot of time and effort to do these things, but I enjoy doing them. This one envelope is a half day’s work for me. Now, I give all my loved ones handmade cards and gifts on special occasions like their birthdays, Christmas, Diwali, etc. ”
In fact, Arushi is now accepting orders to made handmade envelopes and plans to diversify to other handmade products, under her new venture, ‘Purple Butterfly,’ which is also a symbol for people suffering from Fibromyalgia.
“It will give me the opportunity to spread awareness about Fibromyalgia. Also, I think with such busy lives of people, a handmade card or envelope gifted to your close ones will surely put a smile on their faces.”
Arushi also shares with me how she has made the best use of the technology, “For all my client meetings, I use skype. Also, I cannot write as my shoulder starts paining after writing 3-4 lines. So, I either send voice notes or use voice typing. I cannot watch TV as it puts a strain on my neck, but, I have watched all the TV series on my laptop by placing it at a certain angle on my bed. So, it’s like, I have figured my way around things, thanks to the unconditional support of my family, especially, my mom.”
“My pain has doubled in the last two years, but now, I’m doing so much more than before,” she adds and my heart reaches out to her.
She also insists on seeing us off and while walking beside me she tells me the real purpose behind starting her own blog.
“Like the plants take in all the bad elements, CO2, inside and photosynthesizes it into Oxygen, I am, too, taking in everything bad that has happened to me, and photosynthesizing it to create my own Oxygen, my own happiness.”
“The main motive behind the blog is not to make people sad and pity me or sympathize with me, but, to understand the real power of hope. I see people giving up and making excuses for every little thing that didn’t go as planned. I want to tell them, don’t give up. You can always do something to turn things in your favor. And, as they say, you will always get what you wanted, but maybe, not in the way you wanted.”
I finally gain courage to ask her about love and relationships in her life to which she smiles meekly and says, “I’m hopeful that it will get better and that somewhere, there’s a mad scientist out there, finding a cure for Fibromyalgia and I’ll get healthy again, but, I cannot be impractical. I also have to be prepared for this not getting better. You see, Jayati, I cannot be his regular girl! When you see your friends getting married or talking about their partners, of course, you miss that angle. But, for now, I have put it under the mattress, locked it down in myself, deep down.”
I cannot control myself to say to not lose hope to which she tells me in a cheery voice, “No, I haven’t given up hope. Abroad, people with the condition, get married and have their own families. So yes, if there comes that someone who’s willing to understand my condition and willing to deal with it, I’m open, but, I have no expectations,” she manages a laugh (which I can see does not reach her eyes.)
But then, she adds something that I know she means it with all her heart and soul, “I am happy and that’s my coping mechanism. Also, the day I lose hope and get sad, I’ll cut down 50% of my chances of getting any better, and I cannot afford to do that! I know, Jayati, I’m destined for much greater things in life and I know this isn’t it for me!”
P.S. If you wish to connect with Arushi for business purposes regarding her work for Anekto, marketing consultancy, or ‘Purple Butterfly,’ you may drop her a mail on email@example.com.