Daily Times

If you have been living with a rare disease, chances are that you are misunderstood time and again. People with the best of intentions do not necessarily realise what living with a chronic rare illness is really like.

This is where social media steps in.

In today’s age, having some kind of social media presence is usual. Once considered a time-wasting agent, social media has proved to be an important outlet for people suffering from rare diseases. There are a number of support groups on various websites. Facebook alone has provided a huge well-connected platform; consisting of a large number of pages and groups related to chronic, rare, and/or invisible diseases.

Having a rare, and often, invisible illness can often lead to feelings of isolation and loneliness

People can share their stories of health struggles. One can read a number of experiences of fellow warriors of the same disease; from being misdiagnosed to finally having a proper diagnose.

1. Experiences with doctors and physicians

On various social media groups, people share information about physicians who are the best in their fields. Patients can also get recommendations on which specialists to see in a particular area. This saves time and frustration that may come with finding the right person to treat the condition

2. Emotional support

An often overlooked aspect of chronic rare illness generally all over the world, and particularly in countries like Pakistan is the emotional toll such illnesses can cause on an individual. By joining a group, one realizes that they are not alone in this conundrum. They get to know about other people and their struggles, lend a listening ear, offer support and show solidarity.

3. News about orphan drugs

Not a lot is known to the general public about the treatments available for rare diseases. Usage and side effects of orphan drugs (drugs and medicines not widely produced; used to treat rare diseases) are often not known to the patient who is going to use them. Support groups on social media provide a plethora of information about such drugs, through real-life experiences of patients already using them. By having a look at their experiences, one can better prepare themselves for what to expect while undergoing treatment.

4. News about research

Social media is a great way to get news about advanced research that has been going on about rare diseases and their treatment. It provides a platform for people all around the world to share new advances about drugs being developed and innovative treatment protocols being followed in different parts of the world.

5. Success stories and hope

The most important and comforting aspect of joining a support group are the stories of hope and resilience shared by people with chronic rare diseases. Such stories show an individual that much can be achieved even while living with a rare and chronic disorder. At the same time, one does not feel pressured to achieve the same with their lives; as such groups establish time and again that all people suffer differently with varying symptoms. Nobody compares their struggles with another. You are not expected to achieve the same amount of success with your symptoms and that is totally okay. This aspect is one that is understood within the rare disease community far better than the rest of the world. The former knows that success is subjective and it celebrates each little achievement of its peers.

There is a vast number of groups which consist of people who listen and actually understand what you are going through, instead of just a nod of the head and an uncomfortable rush to change the topic. However, such groups also come with their own dynamics. Sometimes, the sheer number of posts in such groups might drain you. Moreover, groups have their own set of rules; some groups may accommodate a variety of topics, while some are restricted to a few. After joining a new group, give it a week or two to decide if you are content with the group. If not, you are free to leave without any strings attached.

Rare disease day is observed on the last day of February every year.

The writer holds a Master’s degree in Library and Information Sciences. She is a poet and the author of the detective fiction novel “False Victories.” She is passionate about books, health and wellness, and arts and crafts.

The author is a freelancer