I am always a bit shocked when I see the “hits” my blog gets that are outside of the United States. It kind of blows me away. I started this blog eleven years ago as a way to cope with feelings of isolation and sadness. It’s become a lot more over the years.
I Just Need Someone to Listen and Not Judge
Over the past 11 years, I’ve found strangers on the Internet often understand my health struggles better than many life-long friends and even family. I live with rheumatoid arthritis, fibromyalgia, thyroid disease, and a skin disease called DSAP. I struggle daily to get through the simplest of tasks because I live with chronic pain. My family and friends are very supportive and I know I am lucky, but even when they try to understand my pain, they just don’t get it at times. Honestly, I’m glad they don’t live in pain like I do.
Living with a chronic illness is very difficult. If I need to vent about the difficult times, I find people close to me either pity me or try to fix things for me. There are even outliers in my life, like a former boyfriend, who accused me of faking things to get out of doing stuff. It wasn’t true and that accusation is a big part of the reason that we are no longer together. Then there are the people who just want to cure me with all kinds of diets and treatments. Recently, at my dad’s funeral, people could clearly see my swollen ankle joints because I was wearing a dress. I can’t count how many people told me I needed to take a water pill to get the swelling out. I told my rheumatologist and she laughed about it with me. Sometimes, I just need someone to listen/obsserve and not judge or cure me. This is where my blog and social media play a big role in my life.
Finding People Who Truly Understand Me
Finding groups of people on social media who understand when I post about living in pain is a blessing. I can post how hard it is to vacuum because my hand keeps going numb and I’ll get Sally Smith from Anytown, USA responding to me with, “Me too!” or “I get it!”. The simple fact that I know I am not alone is so reassuring.
Prior to social media, I felt totally isolated. My close friends were all married and starting to have kids. None of them had time to help me or be with me as I went from doctor to doctor to try to “cure” myself. At the time, I became bitter and resentful. Their lives all moved forward while mine was bogged down with pain, illness and solitude.
In 2009, I found a blog about a woman living with RA. I showed her cartoons to a coworker who said, “She sounds exactly like you!” It was one of those “aha!” moments and it changed my life. I started seeking out people on social media who also had multiple chronic illnesses. Since joining Facebook and Twitter, I have developed true blue friendships. Through social media, I helped to cofound a non-profit, traveled to Washington D.C. to advocate for patient rights, and have found comfort with strangers who simply get how hard it is to live the chronic life.
My personal Facebook account is filled with people who know me longest but my Facebook blog page any my patient groups are filled with people who truly understand me. I value each one. Don’t get me wrong, I make a conscious effort to only share certain information online; I’m not oblivious to the dangers of social media. Not everyone is nice, but the ones who are make all the difference on a tough day. I value these interactions with fellow patients online and plan to continue my patient journey with others who truly understand what I am going through.
Public versus private information
My family and close friends don’t seem to understand why I put so much information about my health out for public consumption. I do it mainly because I remember how alone I felt when I started on this rotten journey. If someone comes across my blog and gets a sense of peace or hope to learn that there is a community of people who understand, then all of my sharing is worth it. It’s nice to know that someone just ‘gets it’ when those close to you are at a loss. I can probably count on both hands my friends who actually do read my blog. I don’t think anyone in my family does. It’s ok. They aren’t my intended audience that I am trying to reach.
I’ve taken a bit of a mental health break from writing due to family trauma. Moving forward, I’m hoping to get back to sharing my story and connecting with “strangers” around the world who also live with autoimmune arthritis and chronic illness.
Oh….and if only I could find a person in Antarctica to check out my blog. Then I will have hit 7 continents!