3 Frustrating Things about Living with Multiple Myeloma

by Blake Hoffmeyer

When faced with a disease like Multiple Myeloma, several things come up that can be incredibly frustrating. It can be very helpful for family and friends to be aware of what those who live with Multiple Myeloma have to endure. For starters:

3 Frustrating Things

1. People don’t know what Multiple Myeloma is

Multiple Myeloma is very rare in the population. This means that a lot of people don't know what a diagnosis entails, much less any of the treatment methodology. Often, because it sounds like other diseases, people confuse it with other diseases. This is completely understandable considering how unlikely any given person is to have been exposed to Myeloma. Nonetheless, it means having to explain what this disease is almost every time someone finds out about your diagnosis as opposed to something like breast cancer which is usually already understood. The American Cancer Society is a great place for Multiple Myeloma information.

2. There is nothing typical about diagnosis or treatment

Each and every person's disease is different. There is no "standard" method of diagnosis. In fact, there are plenty of cases where someone is misdiagnosed for years sometimes before finally getting the proper blood test. But there are many different symptoms of Multiple Myeloma and sometimes it can be difficult for doctors to pair down.

No two cases are treated the exact same because Multiple Myeloma affects people differently. It is a cancer of the proteins within bone marrow, but this can show itself in a variety of ways. Sometimes, it weakens the skeletal structure and damages organs. It can cause renal failure in the kidneys due to processing of the Myeloma proteins in the blood stream. It can cause lesions on the bone tissue as well as a host of other possible secondary issues. Other regimens which specifically attack the Myeloma itself are things like Autologous Stem Cell Transplants. These transplants can take up to six months in the hospital. Living with this uncertainty and trying to explain it to loved ones are common frustrations of dealing with Myeloma.

3. Some people aren’t considerate of your experiences

People who suffer from Multiple Myeloma typically don't exhibit the same outward signs as those undergoing treatment for cancers such as Leukemia or Breast Cancer. For example, most people with Active Myeloma don't end up losing their hair. And although they might not look like they are suffering from the disease, the truth is they are. The immune system is often compromised which means that in some cases the patient cannot return to his or her old job, go to some of the places he or she wants to go and see, and a plethora of other concerns. With Multiple Myeloma, secondary infections can be deadly. These are things that friends and loved ones need to consider when planning to see the patient. It can also be very frustrating for people who don't consider the sufferer's pain which they endure almost all the time. Neuropathy, a pain of the extremities, is often a regularly occurring issue that is constant yet has no outward signs. This can be difficult to convey to people who are unaware.

One of the biggest things that we can all do is learn about Multiple Myeloma. Every little tidbit can help us better empathize with a friend or relative who is currently dealing with the disease. Whatever you can do to inform yourself will be much appreciated and will help you to take a load off of them. Support is essential to keeping spirits high.

Do you have Multiple Myeloma? What sorts of things have frustrated you about the disease? What sorts of things have your family or friends done that have made life just a little bit easier for you? What has been most important in your treatment and recovery? Please feel free to share with others your own experiences in the comments section below.

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