HAIRY CELL LEUKEMIA: LEARNING FROM WOMEN ABOUT SUPPORT SYSTEMS AND COPING

We know that hairy cell leukemia affects more men than women. We also know that having an uncommon blood cancer like HCL can feel isolating. This may be particularly true for women, who rarely meet other women with the same rare disease.

We’ve launched an effort to foster connections among women, enrich their knowledge of HCL, and further empower them. Women leadership and perspectives guide this initiative, and feedback from women will inform how we move it forward. We took a first step and held a webinar for women with HCL on May 21st. Here are some topics that rose to the top of that discussion.

It’s Difficult For Women With Hairy Cell Leukemia To Share News About Their Diagnosis.

“I'm kind of a private person when it comes to my personal health,” said one woman. “I don't want to feel like I burden people when I share what's happening to me because everybody has stuff going on in their lives.” This woman lives in a small town, and news of her diagnosis got out. She was introduced to a friend’s father who has hairy cell leukemia and was able to talk with him about living with the disease. Ultimately, she learned that “sharing and opening up” allowed her to connect with other people and “not feel so alone.”

It’s Challenging To Find The Right Support System, Before And After Diagnosis.

“I went to a regular cancer support group and I found that it wasn't a real good fit,” one woman said. “Many of those women were having mastectomies and were much more ill than I was. I did not feel comfortable sitting there, being in remission when they were very, very ill.”

Other women described their frustration and lack of support before being diagnosed, when acquaintances or doctors didn’t take their symptoms seriously: “I was complaining, ‘I'm tired, I catch colds all the time, I just don't have the energy I used to have.’ People would say to me, ‘Oh there, there dear, it's just menopause.’ So, when I was finally diagnosed with hairy cell leukemia, I felt vindicated. I was right and the doctors were wrong, and now I've got the right diagnosis and I'm going to get better.”

“Watch And Wait” Is Overwhelming.

“I think the hardest thing is not knowing when you’re going to need treatment,” said one woman. “Living with that uncertainty is really hard.”

“I was diagnosed a little over a year ago and I haven't had any treatments yet,” echoed another. “My doctor's doing the watch and wait. This causes a tremendous amount of anxiety.”

A Diagnosis Of Hairy Cell Leukemia Doesn’t Have To Define You.

Having a rare disease can be overwhelming, but many women said they learned not to let it be their only focus.

“I did share my diagnosis privately with my colleagues. One of my colleagues said, ‘well don't let it define you.’ That's hard to do when you're going through the treatment and you're living with uncertainty, but I have to admit I've held on to that. It’s now been seven years since treatment. I think we all realize how much we appreciate things differently when we've been through something like this. But it is important to try to not have it define you.”

“Start planning your life after cancer. Your life after chemo. This is not going to define who you are, but it sure can help shape the type of person that you are. So, start setting goals. Find things to look forward to: ‘When I'm done with this chemo, when my labs are stabilized, I'm going to do this and this and this.’ Start setting some goals for yourself because we are so much more than just that diagnosis. That's just a smidgen of our lives. I wish I would have done that a little bit more instead of just focusing on, ‘oh my gosh, oh my gosh, this is happening,’ because it sure can consume you.”

It’s Difficult For Women with HCL to Practice Self-Care, But This is Very Important.

“I think for those of you who are listening or are caring for someone with this or you're going through this yourself, please, please, please, put yourself first. Now I know that women, we give, and we give, and we give. You're a mom, you're a spouse, you work; we give so much and what do we do for ourselves? And I know every single one of you knows exactly what I'm talking about. We are low on that totem pole. Now, when you're going through something like this, any type of chronic illness, putting yourself first is so important and it's not being selfish. Don't ever think of yourself as being selfish for putting yourself first. Because we all know you cannot pour from an empty cup. So, first and foremost, please think of that. It’s not taking away from anybody else.”

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We’ve developed a page for women with hairy cell leukemia where we will be sharing resources and highlighting stories. Visit the page. >>

View a transcript of the May 21st webinar here. >>

Learn about our patient education resources, including webinars, an interactive patient portal, and more. >>