By Almas Shamim

“Community”- how often we use this word! Indeed, it is a very powerful driving force in so many ways- be it by giving us a sense of belonging, an identity or a safe haven- we all know how important a “community” is.

But, for once, let’s get out of our narrow view of this word- let’s try to belong to a community of a particular disease. Doesn’t sound very great, does it? But, this community of diseased people is as powerful as any other community. Today, let’s just go through all the benefits of forming such “community groups”.

A community group of a disease, let’s say diabetes, gives all the member patients a sense of belonging. It’s a group of people where all understand our journey and our difficulties of dealing with this disease. It becomes a place where new patients can benefit from the experience of patients who have been dealing with the disease for a long time. It can be a common place to share all the knowledge we have about our common health condition, a place to raise our doubts and questions and also a place to receive answers about the same.

We always hear complaints of how little time doctors and nurses spend ‘explaining’ a disease to their patients. In such a situation, a community group can be a great way to overcome this lack of information with each individual taking initiative to find information about a part of the disease process. It, thus, becomes a great place for myth-busting.

There have been great examples of how community groups have helped members adhere to their treatment, by assigning a “buddy” to each member. These “buddies” can take the role of reminding each other to take their medicines on time, or get their blood tested on time. It brings in more accountability on the patient but in a friendly way, which, let’s face it, our existing health system fails to do.

Though self-help to the patients is a crucial role of ‘community groups’, it is not restricted to self-help. ‘Community groups’ MAY, if properly channeled, become strong advocacy voices. Let’s assume (I repeat, ASSUME) a situation where G.B Pant Hospital fails to provide insulin for diabetics for a month. Insulin, in the private market is expensive and may not be affordable to many. These community groups of diabetics can then mobilize themselves and others to approach authorities. Such groups don’t just have the power of number but also the power of experience and validity. Elected representatives are bound to hear the plea of people who are really suffering from a shortage. If they don’t, the liability for them is high. Judiciary and media are other possible avenues for taking the case further. Such groups have been key in making many drugs available through national programs, in our country, as well as many other countries across the globe.

While advocacy with the government or administration, may seem a bigger challenge, small scale advocacy of raising awareness and providing information are surely something ‘community groups’ can take on easily.

Additionally, there is always the advantage of meeting new people, making new friends and contributing to the community in a positive way.

But, how do we go about it? Well, we could start with bringing together a few friends known to us who share a common disease. It could be diabetes, hypertension, any cardiac problem (heart disease) or even a family member’s terminal illness. We could organize weekly, fortnightly or even monthly meets to discuss and share our experiences and complaints. The meets need not be ‘grand’, they could be in the living room of one of the members, or a common park. There could be many such groups. The whole point is to empower ourselves in matters of our own health. Fabulous ideas on health promotion and prevention can arise from such meets. The best part- it is our own idea for ourselves.

So, are we game? 

Almas Shamim is a public health specialist with a great interest in sexual and reproductive health and rights, and feminism among Muslim women. She currently works for an international humanitarian aid organization in New Delhi and can be contacted at This email address is being protected from spambots. You need JavaScript enabled to view it.