Living with Myeloma

As the disease myeloma is being unravelled one thing becomes apparent: myeloma is unique and each person’s response is specific to them. Certain features of myeloma are common but how we live with myeloma makes a difference in the journey.

Physical strength, disease management, connectedness, social support, attitude, anxiety and fear, and coping abilities all affect wellness and how we live with myeloma. But knowledge gives you the ammunition to know when to seek medical help, what the new treatments are, and help in learning how to become your own advocate – practical knowledge.

But the greatest part of knowledge should include self knowledge: being in touch with you. For some, this is a novel experience. Listening to your body and “knowing when something is not right” sounds like common sense but for many we tune it out or hope “it will get better.” You can no longer assume infections will clear up by themselves; some become life-threatening with myeloma. Pain is an important symptom you can not ignore.

Lastly, and most importantly no one, except you or those who love you, will take better care of you. Abdicating your care to others, even excellent medical professionals, is unfair to you and to them and important health clues may be missed. Being a knowledgeable partner in your health care gives you the best chances for survival and quality of life.

While these are vital aspects of living with myeloma, the information in this section is limited to useful suggestions on how to stay well, medical treatments used for myeloma and stories of how other people have coped with a myeloma diagnosis.