What personal experiences have you had that drew you to champion change around chronic illness?
I am the third in a generation of women who have fought for the rights of the medically underserved. My grandmother, who was a doctor and Member of Parliament in India, laid the foundation for a polio-free India. Spurred by the realization that her daughter (my mother) was diagnosed with polio in 1945, she refused to accept what the medical community told her at the time—that nothing could be done—and started beating down doors until she found the best medical care available. But that was just the beginning. Frustrated by the scarcity of resources, she went on to dedicate herself to changing the lives of polio victims across India by building rehabilitation centers, Children’s Hospitals, and tirelessly lobbying Prime Minister Nehru, who became an advocate for her cause. She even received India’s version of the Nobel for her work, but it is really my mother who is just as important in this equation—as the determined warrior, who still battles a crippling illness. So, Sollis Warriors is highly personal to me, as it’s not only the story of the two women who raised me, but also my story.
And what is that story?
I’ve suffered from endometriosis, for which I’ve had surgery, and most recently I broke out in hives, which led to a chronic condition called CIU. CIU is a fancy term for “Nobody knows why I have sudden extreme facial swelling and a full body rash the color of a pomegranate!” I only know one other person with my condition.
“If you have to go to the ER, be kind to the triage nurse—they might as well be the bouncer at Studio 54.”
How has Sollis been able to help you through your journey?
As a patient, the logistical and emotional support that Sollis’ medical team has given me is immeasurable. Sollis doctors have directed my care at the ER on multiple occasions; they’ve taken the time to explain what the half-life of a drug is (and have stayed on the phone with me while my boyfriend administered an EpiPen!); Sollis care coordinators have helped me obtain Xolair, a difficult-to-find injection I needed while traveling in Mexico; and have set up my entire ecosystem of specialists. Sollis has truly been there for me when it mattered most.
What about others who do not have access to Sollis? How can they be their own best advocate, particularly in the context of the ER?
If you have to go to the ER, be kind to the triage nurse—they might as well be the bouncer at Studio 54. They’re responsible for categorizing your complaint and identifying the appropriate level of care. The most effective way to communicate is to compare what you’re currently experiencing to a previous experience: “I’ve never experienced this type of pain before,” “I know my body well and something doesn’t feel right,” “I tried x, y, z before coming to the ER and nothing helped,” “I spoke to my doctor and they’re concerned about _____,” “I feel pain on a scale at “N” on a scale of 0-10.” Lastly, make the work as easy as possible for the medical team. Carry a personal medical card with you so you can quickly provide it to anyone who might need it. The nurses, technicians, and doctors will be immensely grateful and it’s the little things that go a long way. Don’t expect the hospital to have a copy of all your medical records, even if you’ve been there before. While your private doctor may be affiliated with the hospital, this doesn’t mean they share the same systems. Bring along prior imaging reports and the imaging CDs so your doctors can compare and provide you with a more meaningful medical opinion.
Beyond the ER, have you had to advocate for yourself in a medical system that has little patience for chronic illness? Any suggestions?
Be prepared for your doctor’s appointment like you’d be prepared for a meeting. Bring all your labs, test results, and write a medical journal detailing your symptoms, treatments, medications, side effects, and any other relevant details, down to what you ate on a particular day. In my case, I have a 16-page document with photos (nerd alert!).
“I’ve been put on steroids several times for my hives. ‘Roid rage’ is real. I’ve literally yelled at my best friends to look at a pretty sunset.”
Did you ever start to feel like even your friends and doctors might be getting tired of hearing about your condition? But on the flip side, is being asked about it regularly somewhat of a double-edged sword?
The worst part of having CIU is that the hives last up to three weeks, and there is no clear recovery arc. Nothing can change for days at a time. When considerate friends ask how I’m doing every day, it’s sometimes hard to deliver the answer that nothing has changed, day after day.
Can you describe any moments of humor or embarrassment that have happened along the way?
I’ve been put on steroids several times for my hives. “Roid rage” is real. I’ve literally yelled at my best friends to look at a pretty sunset.
How has your personal approach to dealing with these outbreaks evolved over time? Have you gotten better at avoiding the self-loathing that comes with not looking/feeling your best and been able to lean more into self-compassion?
I’m not going to lie. When I have an episode and look as terrifying as I look, it’s hard not to feel like I’m the star of a movie called Fear and Self-Loathing in New York! But these are the steps I’ve taken to mitigate the feeling: Practice gratitude, treat myself with the same compassion I would a friend, take care of myself by meditating, stretching, baths, resist the urge to compare myself to others.
I am also more aware now of my critical thoughts, and observe them rather than buying into the story they are telling.
What do you think is the biggest misconception about chronic allergies/hives, and what do you wish you could help people understand better?
I think people think of skin issues are not just surface issues, therefore less serious, than other medical issues, but it’s important to understand that body organs aren’t all internal like the brain or the heart. In fact, the skin is the largest organ on the body, weighing 8 pounds and spanning 22 square feet. It keeps us from literally evaporating.
Any good words to live by?
“Grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” Practicing acceptance and compassion is key to surviving chronic illness.
