If there’s one thing Tinu Abayomi-Paul knows for sure, it’s that laughter can help when the going gets tough. A blogger and social media influencer-activist, Abayomi-Paul has chronic lymphocytic leukemia, a slow-progressing blood cancer, along with several other disabilities, including a degenerative spinal disorder, fibromyalgia, and severe asthma. Coping with illness is often her full-time occupation. But none of it has affected her funny bone.
“When you start talking about cancer, people immediately start looking for exits,” she points out.
A bit of humor tends to put them at ease. Plus laughing is a big part of who she is and being authentic matters to her. “I try to always be myself,” explains Abayomi-Paul, a web marketing expert who has been active online since the early days of the internet. “If people meet me in person, they’re not meeting some foreign creature. I’m not a different person.”
On her main blog, Tinu Stuff — one of many that she runs — Abayomi-Paul talks about living with chronic illness, but also touches on topics such as civic duty, activism, and living as a black woman. She creates helpful resources for those living with apparent and non-apparent disabilities, such as this guide to hashtags for social media chats.
Abayomi-Paul is also active on social media. She posts frequently and helps facilitate chats, speaking candidly about her personal experiences, such as the brain fog that makes her daily life difficult or her mediport that was recently painfully removed from her chest. She regularly features tips and encouragement for others, using hashtags to widen her reach and focusing on making all content as accessible as possible. Instead of just posting a beautiful photo of a flower, she’ll describe it for the visually impaired, for example.
It’s also a place for her followers to buy her “a cup of coffee” — a small online donation to thank her for her work and helps her cover co-pays and meds.
When she was first diagnosed with cancer in early 2016, Abayomi-Paul had known something was wrong for a while. “I’d had minor fatigue before but this felt like there was a hole in my butt and someone was pulling all the energy through my body through that hole!” She saw specialist after specialist, hoping it was something other than cancer. “Then the doctor sat me down and said this is definitely lymphoma,” she recalls.
“I must have looked fine outwardly because she kept on talking for awhile. Then all I could say was, ‘I’m sorry, did you just say cancer?'”
Luckily, Abayomi-Paul had chosen a great oncologist who patted her hand reassuringly and started again, this time more slowly. “I look for doctors who are foreign or who have participated in Doctors Without Borders or who are women if I have the choice,” she explains, adding that like her, many women feel their doctors don’t always take them seriously. “I look for people who are more likely to be empathetic to career sick people. My number-one job is being sick.”
Chronic lymphocytic leukemia (CLL) is a type of cancer in which the bone marrow produces too many lymphocytes, a type of white blood cell. People with CLL may not have obvious symptoms for many years; bruising, fatigue, and swollen lymph nodes are among the common ones when the disease does make itself known. Abayomi-Paul believes she may have had CLL as far back as college, but didn’t pursue further testing at the time. Now, she often feels she has to prove to medical professionals that yes, she actually does have CLL, since the disease typically affects older white males in their 60s and up and she is a black woman in her 40s.
“I have to bring my medical records with me to show I’m not crazy,” she says, laughing good-naturedly at the absurdity of it all. “I don’t present as a person who’d have this.” She’s also accepted that not everyone will be there to support her. “Some people really don’t want to talk about having cancer. They are scared. They don’t want to acknowledge it exists. There are people I thought I was close to and I haven’t heard from since my diagnosis. Good friends. But there are also people who haven’t left my side since the moment they heard.”
Sharing on social media became a sort of defense mechanism for Abayomi-Paul. “I write to vent,” she says. “I also write in a humorous way so I can talk to my friends about it. It’s also a way for me to do fundraisers to help cover the costs that insurance doesn’t, like clothing that didn’t feel bad on my skin after chemo. Things you’d never think about. I noticed more people engaged when I was humorous.”
Not that she always feels like laughing. In addition to dealing with CLL, which can have unpredictable flare-ups and remissions, she has other chronic illnesses, including depression and anxiety, which surfaced as she was undergoing treatment. Some of her other disabilities, including her spinal disorder and asthma, are negatively impacted by both cancer and its treatments. It does mean more hospital visits to see an orthopedic doctor (see this website to learn more) who may be able to help her manage her spinal disorder. She also worries constantly about secondary cancers popping up.
“Nobody talks about this stuff,” she says.
“Your friends don’t know how to behave and you don’t know how to tell them to behave. When that happens, I wish people would just do a simple: ‘I don’t know how you’re going to take this so can I just ask a blunt question?’ I guess I’ll become a poster child for this cancer so we know how to talk to each other! Many of us will have cancer at some point.”
One of her biggest pet peeves is warrior imagery.
“This is an unscientific sampling, but 90 percent of the people I speak to hate it, especially the idea of ‘losing the battle’ to cancer. You don’t put on gear and say, come on cancer, come and get me! It’s something you survive and endure. Warrior imagery makes you feel like you’re not doing your best to fight it. If you die, does that mean you lost? No, it means you die. If you adjust your psychology, if you remind yourself that you are going to endure and triumph, if you change that imagery, it might help you hang on when cancer is kicking your ass.”
She also gives a hard pass to unsolicited advice. “People need to stop harassing us about our illnesses. It’s the only thing that has made me regret opening up on social media about living with chronic illness and raising awareness. How much people want to talk over you and not listen, to present their own argument with a complete lack of data, how they want to give opinions as fact. They just come out of nowhere!”
Not even the rudest of trolls could stop Abayomi-Paul, though. At home in Texas, where she lives with her caretakers — her mom, a nurse, and bestie sister (whose children Abayomi-Paul lovingly calls “my kids”) — she’s always hard at work when she’s feeling up to it, whether researching her own health options or reaching out to others through social media. It’s a way for her to put her two decades of marketing expertise to use while making a real difference, no matter how awful she’s feeling at the moment.
“Disabled people have a lot of issues that non-disabled people don’t,” says Abayomi-Paul. “When my rights are protected, everyone’s rights are protected. A more successful society helps us all.”
Are you or someone you care for living with CLL, fibromyalgia, asthma or another health condition? Sign up to share your experiences with others.
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