While sitting at a local fibromyalgia support group contemplating her probable diagnosis, Julie Ryan heard the spoon theory for the first time. In that moment she knew she finally had a way to explain how she was feeling.

“When you are healthy you expect to have a never-ending supply of ‘spoons,’” the theory goes. “But when you have [a chronic illness], you need to know exactly how many ‘spoons’ you are starting with.”

Soon after, she received an official diagnosis and launched Counting My Spoons to blog about her experience with fibro.

“Initially it was just kind of a way for me to kind of keep track of what was going on and keep track of the information that I found in relation to my health, as opposed to doing it on my regular blog,” she explains.

But what began as more of a personal project soon became a go-to resource for people with fibromyalgia — not to mention the very reason Julie is grateful for her illness.

“Nothing about where my life is right now would be there if it wasn’t for my illness, so I have to say I’m very much thankful for it.”

Started From the Bottom

But it wasn’t always this way for Julie. For about two years after her diagnosis she was too sick to do much more than lay on the couch. She used her blog, but mostly to share the odd study or article she had found.

“There were times I wondered why it was worth continuing and questioned whether I should bother [with life],” she told NewLifeOutlook.

“Eventually I did reach that bottom point where it was either I check myself into the local hospital and be watched, or reach out to my family and say, ‘Look this is where I’m at, and I need to do something different.’”

So, she decided she needed to make some changes. She focused on her health and was able to pull through that dark phase in her life and put her energy towards helping herself and others.

“As I was able to find ways to improve my health, then my goal became to give that back to other people and to hopefully help other people who were in my situation,” Julie says.

“Coming through that and getting to the other side — I’m at a different point now,” she says. “There are opportunities in front of me now that never would have been there before.”

With her newfound hope, Julie was able to build her blog — named one of Healthline’s best fibromyalgia blogs four times — into a community for the chronically ill.

“A lot of what I write now — I hesitate to call it inspirational, but [it’s] kind of in a way motivational. A lot of people reach out and thank me for that and for the medical studies and for just letting them know they’re not alone.”

New Opportunities

Julie has also recently launched a network for bloggers with chronic illness to help them grow their blogs too.

“[I wanted to] answer a need that I saw on my own blog and at the same time answer it for other people as well.”

Niche markets like mommy blogs and foodie blogs are greatly successful for both bloggers and sponsors, but Julie found there was nothing that fit well enough for chronic illness bloggers. So in January 2016 she launched the Chronic Illness Bloggers network, which now supports 400 members.

Crushing Shame and Stigma

Blogging about chronic illness doesn’t come without its challenges. People with chronic illness endure shame, stigma, and lots of vulnerability just by talking about their condition.

“There’s so much of that wrapped around what we are that it’s difficult to share it with even those closest to us,” Julie says.

“To allow ourselves to be that vulnerable ... in a way I think it’s easier for us to share it online because it’s not face-to-face.”

Talking about their illnesses is just one way chronic illness sufferers like Julie are doing their part to eradicate that shame and stigma.

“Even sharing with strangers there’s a lot of shame and vulnerability, and you have to reach the point where you can allow yourself to do that before you can put yourself out there in that way.”

Self-Care — #SorryNotSorry

One of the biggest ways the chronically ill are made to feel guilty for their illness is when it comes to self-care, something Julie has always advocated for.

“Self-care is like the least selfish thing that you can do. It’s that whole ‘you have to put your own oxygen mask on first’ thing,” she explains.

“If you don’t take care of yourself, then you don’t have anything left to give to your family, or to give to those around you. It’s really sad how often we see people not taking care of themselves because they feel like they have to take care of somebody else.”

And while self-care is important, Julie notes that allowing your loved ones to see your illness is crucial for their understanding of the condition.

“It’s really important that we be honest with them and let them see the reality of the situation, because if all they ever see is us out there doing things, if all they ever see is us smiling and happy, then yeah they’re going to question when we tell them how we’re chronically ill,” she says.

It’s hard for those on the outside to understand something if they aren’t living it — especially when they don’t witness the pain and suffering chronic illness warriors face every day.

Years ago, even Julie doubted a friend with migraine before she was educated on the condition, and on chronic illnesses in general. She thought perhaps she was being dramatic or making it up to get out of work since she had never really seen her in pain.

“We want to be able to smile and do all those things, but if we don’t let them see the bad too, they’re never going to really understand.”