Evie Evans Nevin is a former journalist who blogs about living with a genetic condition called Ehlers Danlos syndrome (EDS) on thezebramom.com, writes Denise O’Donoghue.
She was diagnosed in 2013 with a group of disorders that affect connective tissues and the name of her blog is a nod to the zebra as a symbol of rare diseases.
Her two children also live with the same chronic illness. Evie has found blogging helps her deal with her own situation. “Since I can’t work anymore, blogging allows me to keep my skills sharp. I have to do a lot of research and I often interview guest bloggers, something I would have done in my career,” she said.
“I also like the way blogging gives me an emotional outlet. My main goal in blogging though is to make others with chronic illnesses feel less alone.”
She says her blog gives her something to concentrate on while she is at home.
“I spend six out of seven days at home so it gives me something to focus on.”
While Evie intended to just write about EDS on her blog, she has found herself expanding and writing about living with chronic illness.
“I initially just focused on writing about EDS. It was too niche. Now I have branched out talking about chronic illness in general. It can still be tricky but as time goes on I find it easier.”
Evie, who lives in West Cork, was surprised by how difficult blogging can be and how time-consuming it is.
“Blogging is extremely difficult. It’s like six jobs in one. You have to be a researcher, editor, author, photographer, graphic designer and a digital marketer. It’s time consuming. Also, doing it professionally takes a long time.”
Evie says she enjoys the community aspect of Irish bloggers, but says she can feel discouraged when she compares the number of followers she has to those of other bloggers.
“It’s lovely in some senses. Certain groups have a great feeling of community. In other ways it’s really competitive. I haven’t been involved in any competitiveness but I do see it happening. Because I’m so niche in my blogging it can be discouraging to see your following remain small.”
Me: That was a fabulous day. I really enjoyed that. Totally worth the trip. EDS: Heeeeeyyy Me: Oh Christ. What do YOU want EDS: Had a good time, did you? Me: Ummm...no? EDS: You can't fool me girl, you know the rules. Me: What rule? EDS: For every day of enjoyment you must pay at least 3 days in pain and exhaustion. Don't act like you don't know the score. Me: SIGH. Can you NOT? I have to look after my son tomorrow. My husband is away. EDS: Not my problem. *ZAAAAPPPP* Me: What did you inflict me with this time? EDS: Painsomnia. Me: 😑 EDS: 🎶 What doesn't kill you makes you stronger🎶 Me: 5am. F%€$ #ehlersdanlossyndrome #painsomnia #chronicillnessmom #chronicillness #chronicpain #payday #invisibleillnesses #irishblogger #bloggermom #fml #nofilters
Another welcome outlet for Evie is social media, which she uses to promote her content and keep in touch with others.
“I would use Instagram almost daily. I post my own blogs and other chronic illness bloggers’ articles on my Facebook and Twitter. I also post Irish bloggers’ blogs if I think my followers will like it.
“Social media is my social life since I can’t leave the house much.”
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