The Invisibility of Blood Cancers to Others

One of the unique characteristics of blood cancer is that it is not able to be seen. There are no surgery scars, loss of hair, or changes in appearance one sees in other cancers. Sometimes this can be a curse rather than a blessing.

As a person with Myelodysplastic Syndrome (MDS), I look the same as before I was diagnosed, except I am paler and there are bags under my eyes. I feel lucky as I observe others with ports and scars and missing breasts that are more obvious.

The huge side effect that is life-changing for me is a crippling fatigue. All cancers have the side effect of fatigue, whether it be from treatment or the cancer itself. However, with CLL, MDS, and other blood cancers, the energy never returns. We are always anemic with low blood counts even when in remission. I am forced to take constant breaks, have an inability to stand for extended periods of time, and going up and down a flight of stairs takes forever. I cannot rush from one task to another like I used to. I plan my day to prevent overworking. In summary, the fatigue is persistent, intense, and challenging.

I am exhausted. I am tired of not being able to move like I used to. I am frustrated that my body forces me to stop tasks before I finish due to exhaustion. I am tired of overplanning and then being upset I could not finish the tasks I outlined for a day. Fatigue can be chronic and crippling. I am thankful I do not have surgery scars, radiation scars, and visible signs from devastating cancer.

However, invisibility leads to different problems. I must constantly explain to people why I cannot do certain tasks. Most people are very understanding, and my guess is I am harder on myself than anyone else is. I explain to others when unable to do an activity such as shopping or hiking that the blood does not flow through the body like in “normal” people and I become weak and unable to stand or walk for long.

One of the problems with blood cancer is that the general public knows so little about them. Breast cancer is so common that according to breastcancer.org/facts-statistics it is estimated that over 376,000 people will be diagnosed in 2025. I think every one of us knows someone who has had breast cancer or may have it ourselves. Education has led to earlier diagnoses, allowing people to live longer despite this disease.

Now, let's discuss blood cancers. Estimates were done by “Facts and Statistics Overview on General Blood Cancers.” In 2024, it was believed around 187,740 people would be diagnosed with lymphoma, leukemia, or myeloma. For Myelodysplastic Syndrome, the average number to have this disease is 15,510 per year and Myeloproliferative Neoplasms (MPNs) 13,871 per year.

Most people never know someone with blood cancer. They have never heard or read about how patients are diagnosed, treated, or what side effects the patient experiences.

Therefore, it falls on those of us with these rare diseases to explain to others what we are going through, and it is up to us to educate. Like any other cancer, it is important to have knowledge because these tricky little diseases can occur at any time. Raising awareness about lesser-known cancers is crucial. Consequently, I strive to maintain patience and provide comprehensive information. It is up to me and others with my type of cancer to make it visible.

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