Friendships After Diagnosis

After my lupus diagnosis, it really opened my eyes to see who really were my friends. When I got diagnosed I was met with an assortment of emotions, ranging from genuine care, to pity, to skepticism and wonder.

Because I was the only one in my family and friend group to have lupus or any sort of autoimmune disease, many were curious what lupus was. They all heard about it because of celebrities like Selena Gomez or Nick Cannon, but no one really knew what it was.

When I explained that lupus was basically my body attacking itself many were surprised and I could see the shock and sorrow in their eyes.

Hurtful and dismissive reactions

A lot of people gave unsolicited advice such as "try yoga" or "eat more carrots and peas" that should help with the lupus. I literally rolled my eyes and shook my head and said no thanks. Others tried to brush off the severity of the disease. I didn't look that "sick" so I should be fine. They felt that I was just over exaggerating and didn't understand why I would have to cancel last minute or have to leave early.

These were all hurtful comments and I couldn't believe that these were supposed to be people that cared about me. Living with lupus was hard enough and people like that didn't make it easier.

Protecting my peace with boundaries

So eventually I cut these people out of my lives to protect my my peace of mind and my boundaries. Others slowly pulled away. They stopped inviting me out or checking up on me. They couldn't handle my new normal and the friendship just fizzled out.

The friends that I did have left were amazing. They were truly understanding and accepted me and my health conditions. They didn't make me feel like a burden or feel guilty if I had to cancel. They checked in on me to make sure I was doing okay. Even though I may not see them in person all the time, the open communication via text or phone call was always there and I truly appreciated it.

But something was missing

But I always felt that there was something missing. My family and friends again were truly amazing but they couldn’t really understand what I was going through. They weren’t in my shoes so they truly didn’t know what it felt like. My level of fatigue was way different than theirs. They didn’t know what it was like to have back-to-back appointments and be the youngest person in the waiting room. I wanted that level of connection. Which is why I turned to social media to meet others like me.

Making friends is an essential part of life. But making friends when you are older is hard and then when you add on a chronic illness it is even harder. I didn’t know if I was going to find someone to connect with but I wanted to see if there were other people like me. I had nothing to lose and everything to gain.

Connection through social media

Eventually, I was meeting other lupus warriors from other states and then soon I was meeting people from all the world. I started to gain a plethora of virtual friends. I was soon speaking to people from around the world from the Philippines, Nigeria to the Netherlands. It was incredible being able to connect with people who knew exactly what I was going through.

When I got my Sjogren's and non-Hodgkin's lymphoma diagnosis, the friends that I had met online really had uplifted me up. Their prayers and support were so appreciated and it really pushed me to keep on going. I am forever grateful for social media for bringing so many people together.

Have you met friends through social media?