Navigating “Not Looking Sick” Living with Chronic Blood Cancer

If you've ever felt unseen, misunderstood, or dismissed because the chronic blood cancer you live with isn’t visible, you're not alone. This article offers validation, practical tools, and empowering ways to navigate the emotional weight of living with an invisible illness. 

Messages Others May Be Telling You

After the initial shock of a diagnosis fades, many people with chronic blood cancer face ongoing frustration—especially when they hear, “But you don’t look sick.” Because the cancer isn’t immediately life-threatening or visible, those around them may downplay its seriousness, expecting life to continue as usual.

In The Myth of Normal, Dr. Gabor Maté notes that trauma impacts everyone differently. What may seem minor to onlookers can be something that has a major internal impact on the person experiencing it. This is especially true for people living with chronic blood cancer. 

Many of the struggles are invisible: persistent fatigue, increased infection risk, anxiety associated with the uncertainty of cancer progression, and the financial stress of long-term care. Over time, these challenges can become overwhelming. And even when loved ones mean well, not feeling understood or validated can add to the emotional toll. 

In her new book, The Big C ² - stories from the chronic side of cancer, Ruth Fein writes about Michele, who lives with chronic leukemia.

Recently, two of her closest friends made comments that had Michele trying desperately to keep her raised eyebrows from freezing in place. “You are lucky you have never really felt bad,” is the paraphrase she remembers. “What?!?” 

 

“Well, we always thought you looked great, so you must feel great,” they said when she finally had a heart-to-heart with them about how shocked she was by their comments. 

 

“These were days that I couldn’t even fathom picking up the phone; I didn’t even want to get dressed or wash my hair... or get out of bed,” she recalls thinking. Then she was hit by the common denominator. She never explained, even to her besties, how badly she was feeling. 

Messages You May Be Telling Yourself 

You might feel you need to push yourself to meet the expectations of others or based on how you want others to see you. While it can be difficult to feel your cancer is minimized by friends or family, you also don’t want to be treated as a cancer “victim” who is always needy. There is a natural desire to hold on to the life and identity you had before your diagnosis. Not fully accepting and sharing your new or changing reality is one way your mind may try to protect you.

One of the most helpful things you can do is find ways to focus on the parts of yourself that bring you joy and purpose while acknowledging the reality of your health and any related limitations. 

For example, if you’re naturally social but feel isolated due to infection risks, talk to your doctor about preventative strategies that could help you safely reconnect with others.

Openly sharing your values, routines, and goals with your doctor can also help shape a care plan that better supports your day-to-day emotional well-being. And if you don’t feel truly heard by your care team, it might be time to look at other more supportive options. 

You’ll find a list of specialists by blood cancer type at the end of this article. A trusted healthcare provider can make all the difference, along with a team that includes a social worker, mental health professional, or others who can help you integrate your physical and emotional health needs.

Setting You Up for Success

Building healthy coping strategies and surrounding yourself with supportive people who understand what you're going through is essential—especially when you are triggered by comments like, “You don’t look sick,” while you are struggling internally. 

Finding support groups that include other patients with similar experiences may help validate your feelings. If you find it difficult to process your experiences or communicate your needs to others, working with a licensed therapist—either one-on-one or with family—can be incredibly helpful. 

If you feel pressured by those around you to act as if nothing has changed since your diagnosis, symptoms, and treatments, it’s important to set clear boundaries. Let them know what support actually looks like for you. You can be both direct and kind. When loved ones are aware of strategies to help you feel more seen, understood, and empowered, they are more able to help you feel your best.

Below, we’ve included examples of responses you can say if someone says, “But you don’t look sick.” 

Responding to “You Don’t Look Sick”

1. Acknowledge the good intent, but clarify the impact:

• “I appreciate that, and I know you mean well, but comments like that can actually make me feel like a “cancer imposter” – like I’m not really going through this.”
• “Thanks, I know it might seem like I’m okay on the outside, but it doesn’t reflect how I feel inside.”

2. Use “I” statements to express how it feels:

• “I know I don’t look sick, and that’s actually one of the hardest parts—because I’m really struggling internally.”
• “I’ve learned that appearances can be deceiving, even to myself sometimes.”

3. Gently educate if the moment feels right:

• “It’s an invisible illness—things like fatigue, brain fog, and pain don’t always show up physically.”

4. Share more if they seem open; if not, protect your energy:

• “If you’re curious, I’d be happy to share what it’s really like to live with this.”
• Or simply: “Thanks,” and move on if that’s more comfortable at the time.

5. Validate your own experience:

• You don’t have to justify how you look to others or yourself. While it poses emotional challenges not to look sick, it can also help you feel better about yourself, even while you don’t feel well on the inside.
• When it comes to lengthy explanations, save your energy for people who truly matter—those who want to understand.

Bottom line: Use direct communication, not defensiveness. Assume good intent, but honor your truth. You can advocate for understanding without having to prove your pain.

Summary 

Living with an invisible illness like chronic blood cancer comes with unique emotional and social challenges, but you don’t have to face them alone. By embracing your reality, setting healthy boundaries, and seeking support that validates you, you can reclaim a sense of control and connection. 

Connect with a Chronic Blood Cancer Specialist 

If you haven’t already, it’s important to connect with a specialist who focuses on your type of chronic blood cancer. They can offer the best care to improve both your quality and length of life, whether that involves active monitoring, access to the best FDA-approved treatments or clinical trials, or support for managing side effects.

To find a specialist, click the directory link below that matches your type of chronic blood cancer:

• Chronic eosinophilic leukemia (CEL)
• Chronic lymphocytic leukemia (CLL)/Small lymphocytic lymphoma (SLL)
• Chronic myeloid leukemia (CML)
• Chronic myelomonocytic leukemia (CMML)
• Chronic neutrophilic leukemia (CNL)
• Essential thrombocythemia
• Follicular lymphoma
• Multiple myeloma
• Myelodysplastic syndromes (MDS)
• Myelofibrosis
• Polycythemia vera
• Waldenstrom's macroglobulinemia
  

Sources: 

• Coping with a Diagnosis of Chronic Illness
• How to Respond to “But You Don’t Look Sick”
• The Myth of Normal