By Nivriti Butalia
There was burnt coffee, chilled water, a massive cheese platter and warm cookies outside the auditorium. Inside, we were a crew of journalists from emerging markets — at the office of a bio technology company in Kendall Square, Cambridge, Massachusetts, spread across blue cushioned seats in what Wikipedia calls “the most innovative square mile on the planet.”
Nine of the top 10 fastest growing companies in Massachusetts are life sciences companies, and Kendall Square, that one stretch, is packed with offices of big pharma. You might think it was all fancy colleges but Greater Boston is home to nearly 1,000 biotech companies. We were at the offices of one such. They had us over to show us what they were doing. We saw labs, heard talks, watched presentations about which stage of R&D a particular drug was at, how much money invested in which areas. We heard about ‘trigonal peptides’, ‘ablynx antibodies’, about the work they were doing in coming up with treatments for rare diseases; oncology, immunology, multiple sclerosis — what actor Selma Blair has most recently been diagnosed with.
The most hard hitting, relatable talk was a patient talking about dealing with eczema, about what it’s like to live with atopic dermatitis. We couldn’t ask her questions and her name is best kept anonymous. It was a brave talk. October, incidentally, is eczema awareness month.
She was sitting up ahead, hunched up, with two fellow panelists in the auditorium; polka-dotted full sleeved top, maroon pants, looking a tad self-conscious.
She’s a teacher. She has a second baby due. She spoke honestly, even cracking a joke or two. You couldn’t help but empathise. Eczema — and a big part of eczema is atopic dermatitis — lacks the punch of a properly dire disease that make people turn wide-eyed and whisper, “I’m so sorry…”
But atopic dermatitis is a struggle for patients who are told, oh, it’s just a skin condition. Not like cancer or something “serious”. But what of the stigma around a skin disease and the battering your self esteem takes? Yet, what people hear is: You’ll be fine. Use a cream. Go to a derm. Do what you have to. Manage it.
Here’s what she said about what it’s like to live with atopic dermatitis:
“… I felt defeated from the beginning. I didn’t want my disease to tell me one more thing I couldn’t do. As a result, I settled by choosing nutrition as a major. With my degree, I was able to teach health to middle-schoolers…
In my early 30s, I started having more skin reactions on my face. I would go to the doctor as red as possible so they could see my suffering. Thankfully, I found some makeup that could help cover up some of the redness. It was short-lived, though. In addition to my face and hands, I continued to experience atopic dermatitis on my arms and feet. I continued, to this day, I still deal with anxiety about touching certain objects. I have to be super careful about touching everyday things like cleaning supplies, pets, and scented items. Which one is going to make it flare?
Preparing for my wedding, there was a lot of stress, and my skin took the brunt of it. It seemed liked my skin was turning redder by the day. My allergist had me go on an oral steroid to help control some of the redness. I remember suggesting a new treatment option to my doctors but they just went with what they had done before: oral steroids.
I was hesitant about side-affects. But at that time, I thought it was the only thing that would work for me. My skin definitely did look better. But I suffered the side effects, like gaining weight and looking puffed up in my wedding photos…
The symptoms continued after I had my baby. The atopic dermatitis on my hands became out of control. All of my extra attention went to my little girl so I wasn’t able to focus on taking care of myself. When I finally did, it was, of course, the usual cocktail of medicines to help alleviate the symptoms.
I find myself constantly paranoid my daughter will develop severe atopic dermatitis. She’s only shown minimal eczema symptoms. However, at times, I feel a similar guilt like my mom felt. I’ve got this small child… but I feel I have to focus on myself.
I know there is a deeper issue under my skin, deeper than the redness and open sores. I feel this fierce irritation and tingling. I can describe it as an itch you can’t scratch… scratching made it worse each time. Up until this time, all my doctors have been focused on calming down the reaction with steroid creams and other ointments. But I haven’t been educated much on the cause. Most doctors that I see are trying to put a bandage on the situation and send me on my way. It’s interesting to see what my body is trying to tell me. I’ve had so many doctors. I feel like getting to know a doctor is like dating. I’m cautious at first with each visit. (Then) I feel a little bit more comfortable about sharing my fears, frustrations and gripes. If a doctor is quick to prescribe a treatment without really hearing about my lifestyle or routine first, I am skeptical.
As of now, I am fortunate to have a dermatologist who listens and shows a great deal of care. Don’t stop searching until you find a doctor who listens to your needs.
I’m working on managing stress by trying to distract myself from more scratching. I try to take breaths and walk away from stressful situations. A series of videos I found on eczemaexposed.com also mitigate stress by helping me get my mind off of scratching. Some of the videos feature serene sounds and images on a loop. Others walk you through breathing exercises.
Honestly, I was concerned that they wouldn’t work but they did. It helped me fall asleep, and for people with eczema, falling asleep can be hard to do. The itching can keep us awake at night.
Unfortunately, the lack of sleep affected me on the job as a teacher. Because the scratching keeps me awake, it’s difficult to get out of bed in the morning. If I take an antihistamine, the drowsiness makes getting up even tougher.
I taught students in grades six through nine. I enjoyed my students but sometimes I showed up late because I can’t spring out of bed after a restless night of itching and scratching. I don’t function at full capacity if I don’t get a full night’s sleep. And my job is a challenge even if I felt a 100 per cent. Students show no mercy to a tired teacher. If I have had a particularly stressful day, I can tell it affects my skin… I felt conscious when I would have to point out things on the computer with bloody open sores on my hands. I hate having the students see me like that. I try to put some cream or ointment on them but I just leave a trail of grease all over the computer screens and keyboards in my class.
Atopic dermatitis affects so many things I do each day. I can’t say I’ve achieved a great deal in continuously managing it, but it’s helped me to be more aware of this chronic condition.
I am trying to find that formula that works best for me. It’s an ongoing daily journey. But I celebrate the good days. I find triumph in knowing this is not my fault, and I am not alone.”
If you know a dermatology patient who needs a support group, find details on altogethereczema.org