When you are chronically ill, there are many barriers you face in your daily life. However, when you are both chronically ill and South Asian, you experience so many obstacles, you can forget what you are battling. This guide should help you in your diagnosis stage or may feel relatable wherever you are in your health journey. It may even help people who support the chronically ill or disabled to understand what they go through on a daily basis.
1. You don't have to hide your symptoms
Being South Asian, you may get asked to hide your illness/symptoms to avoid bringing shame on your family. You may even just feel like you have to hide symptoms to save people asking the same questions, even with your own family. Whichever way you want to present your illness to others, always know that your condition is not your enemy.
In my experience, there are also two extremes South Asians use to cope with your illness. They are either overprotective and strip away your independence or believe you overreact when talking about your illness/symptoms. Both of these reactions result in people neglecting how you are feeling and coping with your own illness. It can be tiring to continually remind them to listen to you, and sometimes you may not feel like reminding them at all. However, if you show them how you cope with your illness, they will soon learn to listen to your needs, instead of their own. If you are supporting someone with a chronic illness, try to pick up on these behaviours and act accordingly.
2. The deal with herbal remedies
Your family members may try to force their herbal remedies on you. They may bring remedies as “gifts” when they come to visit, or they may even tell you to use herbal remedies in place of western medicine. Although they mean well, it can neglect how you are coping with your own condition. They fail to comprehend that you are caring for yourself and are capable of doing so. Suggesting or making herbal remedies for you can make it seem like you are incapable of caring for yourself. Living with a health condition is tough, and may feel like a second job; nevertheless, be patient with yourself because you are doing the best you can. Also, never feel guilty for not using their herbal remedies, you are in charge of YOUR health.
3. How to handle unsolicited advice
Unsolicited advice within South Asian culture is prevalent; we have been told not to be out in the sun to darken your skin or to only choose specific career paths to have a “good future”. However, when you are chronically ill and South Asian, this becomes a lot more common. Not only can you experience unsolicited advice from outside the South Asian community, but you can also come home to experience more. There is little escape from it.
Unsolicited advice can also sometimes link with herbal remedies. However, it is usually seen as “You need to walk straight”, “I don’t think you need those crutches/wheelchair” or “You should watch this video I found on YouTube that explains how to cure *insert diagnosis name here*”. These examples are also known to be emotional abuse as they each tell you how to change something you are doing perfectly fine. This is precisely why you should not offer advice unless it has been specifically asked for by the disabled/chronically ill family member.
4. When medical professionals don’t know your name
Being South Asian, many of us have unique names that can seem “odd” to others. This means medical professionals may mispronounce your name, ask you how to say your name repeatedly or even avoid saying your name entirely. We have all experienced this throughout our lives. Still, when you have constant health appointments and continuously needing to repeat or correct your own name, it can be taxing. Be proud of your beautiful sounding name, keep correcting them until they are tired. Remember, you are not at these health appointments to become friends, so don’t be afraid to tell them bluntly. They should use your name, and they should pronounce it correctly.
5. You are allowed to be proud of your disability
Disability can be seen as shameful in the South Asian community, which can mean you will get many negative comments about your disability from others in this community. Many pros of chronic illness get overlooked, occasionally even from yourself. Here are some positive experiences you may have experienced from being chronically ill; You are more appreciative of the small things your body can do such as having a shower, you learn to be more gentle with your body, you know what foods your body would benefit from such as cutting out dairy or gluten, you learn the signs of stress and prevent it, you learn how to pace the things you want to achieve throughout your day, and finally, you understand who is really there for you in your time of need.
Although your chronic illness/disability does not define who you are, you are still allowed to be proud of it being a part of you.
5. We are online!
The biggest lesson you can learn from being chronically ill/disabled is knowing that other disabled people do not know of many other disabled people in their lives. However, they are online. We are on Instagram, Facebook, Twitter, you name it. You are likely to find people in your exact situation online. This was where @chronicallybrown was born from, an Instagram page for South Asians with disability/chronic illness. We celebrate having both identities of being disabled/chronically ill AND South Asian. Join us.
Sukhjeen Kaur is the founder of Chronically Brown; an online platform which aims to spread awareness of chronic illness/disability in the South Asian community. Her goal is to break down the stigma surrounding chronic illness/disability in order improve accessibility for disabled South Asians and encourage them to own their illness without feeling shame.