The Power of Online Communities
Psoriasis can often feel like a lonely disease if you don't know others who live with it. It can be challenging when friends and family members who don't have the condition themselves to relate to the daily life struggles that come with the chronic condition.
Coping with the loneliness of psoriasis
One night in the dead of the night, I was in pain and I was lonely. I took to the internet to find some answers because this is what I do when I have no one to ask and no one to talk to. I browsed and searched and read a few articles. I came across a link to an online forum. Curious I went in, it was a bit like knocking on a stranger’s door for me. Nervous yet excited, I clicked like on a Facebook group.
It was like opening a portal to another universe. I stayed up most of the night that night, scrolling through posts, reading comments and absorbing the level of community. I will admit that I was in awe. I would never have thought that so many people were affected by the disease that I was. I never posted anything, I was nervous and sure no one was interested in my story.
Boy oh boy, was I wrong. The next day I braved it and posted my first post, I told a part of my story to gauge the reaction first. I never realized until then quite how alone I had felt in this journey and how much I needed to talk about it. To talk about my fears and concerns, my pain and my anger with people who not only understood, but were going through the exact same thing.
The reaction I received was one I did not expect. People started responding, welcoming me with open arms. My post was met with many who could relate, some offering advice and other who chimed in with sympathy. It was like coming home. No exaggeration, I had felt so lonely for so long, that this was everything I needed and more. Needless to say that the nights and days that followed found me going back for more, interacting with new people and building friendships. Some of the people I have never met in real life, our friendships however or more solid than most. Canada, England and America are where three of my dearest friends are based, we have walked more than a mile together and we will walk many more.
Tips for being part of an online community
- Do it! Find one and join.
- Be kind always, you have no idea what that person may be going through and that it might be the last place they have to go to talk. We do not have to agree to be kind to each other.
- Stay respectful, there will always be people who are rude, don’t agree or have some problem with what you say. Report them to an admin if they are out of line. Stay respectful and if that if that means not interacting with that person then don’t.
- Do not be afraid to share your story and ask for advice.
There is no need to feel alone when there are places that feel like home.
How often do you experience brain fog?