For the past five years, I’ve been living with a condition called chronic venous insufficiency (CVI) that inhibits the natural flow of blood from the legs to the heart. As a result of this condition, whenever I stand, blood accumulates in my legs, causing the veins there to gnarl up. What follows is excruciating pain in words I cannot describe.
There is no known cause for this disease, and in my case, it is most likely genetic. I was diagnosed with CVI at the age of 25 with no previous history of venous insufficiency. Moreover, this disease has no cure and is progressive,a which means it gets worse with time. While CVI has caused me immense pain in the past (and continues to do so even today), what has afflicted me even more is the relative silence around this disease. When I was first diagnosed with CVI, I hunted for support groups online. I looked around on Facebook Instagram, Twitter, and Quora, and found nothing. Whatever few support groups I did find were filled with people from North America and Europe. So in the absence of any India-specific groups, I had to join these.
What I discovered from these support groups was that a quick and temporary fix to CVI came from wearing compression stockings. Think of them as regular stockings, only with added “compression”. These stockings are tight, stick to your skin and are very uncomfortable to wear. For me, navigating physical spaces and negotiating social settings while wearing these compression stockings has been a psychological and physical nightmare.
Each time I step out of the house, I have to ask myself: Will I need to walk or not? Will I be able to sit or stand? Compression stockings are not only uncomfortable to wear while standing, but they are also uncomfortable while sitting, because the elastic stretches when you sit, making the fabric stick to your skin even more tightly. In addition to being uncomfortable, they are also unsightly to see and difficult to wear. A special piece of cloth needs to be placed on the toe to allow compression stockings to slip inside the foot. Thus, the entire process of wearing these stockings takes me around 15 minutes, and I only wear them if I know that need to walk. Once they are on, they must stay on throughout the day, and can only be removed at night before going to bed or before taking a bath.
I face my biggest challenge with these stockings while travelling via air. From the moment I step into the airport till the time I board the flight, I need to stand. But once inside the airplane, I can sit. However, I cannot take off my stockings on the flight because airplane bathrooms are too tiny and aren’t designed for people with CVI to take on or off their stockings. Therefore, the entire airplane journey becomes extremely uncomfortable. Despite trying everything under the sun: homeopathy, allopathy, massage therapy, mud therapy, yoga, etc., nothing has worked. So, I finally went under the knife and had my veins surgically removed some time ago.
Even though the surgery was a success, a sharp pain in my leg remains. And this is the nasty nature of this disease. Because it is rooted in genetics, no matter how hard I try, CVI will continue to cause me pain and might eventually re-emerge in the years to come. In the midst of all of this, I have also had to battle feelings of loneliness. I am yet to meet anyone else my age with CVI in India. And yet, this feeling of loneliness is not unfamiliar. Many years ago, when I began exploring my homosexuality in India, I too felt isolated, dejected, and alone. It took me many years to open up about my orientation and find online support groups. Sadly, I have been unable to do the same now.
Presently, I am at a stage in my life where I still need to think carefully about whether I can step out of my house or not. As a result of these anxieties, I spend most of my time at home. Now, although I do find the time to go to the gym once in a while, I always cover up my legs and look at other cis men with envy. I only wish I could be like them….
The complex negotiations at the airport, my feelings of sartorial inadequacy and my general sense of reticence from the outside world: all stem from the loneliness I experienced as a consequence of suffering from CVI. And while I am blessed to have a supportive family, I am yet to find like-minded people who understand my pain and speak my language.
There are days when sadness continues to engulf me. Knowing that my body is seen as defective and knowing that this is how I’ll probably have to live all my life still terrifies me. Yet, there are many dreams I want to achieve, and hope I’ll be able to do so despite having CVI.
Even today, I’m dependent on compression stockings for my day-to-day functioning. Without them, I am a person with a disability. And yet CVI is surprisingly not commonly seen as a disability. It is a tragedy that there is very little awareness about this disease, especially among younger population (possibly because younger people are less likely to suffer from CVI). But that’s beside the point. I only hope that the struggles of people with CVI in India get more recognition in the years to come. I also hope to connect with at least one more person like me in the immediate future.
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Image Source: Upasana Aggarwal on Medium