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Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I have a friend that thinks that I should be well now. She doesn’t understand why I have to be so careful about bacteria.

A MyMyelomaTeam Member asked a question 💭
Crestview, FL
July 16
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Answer Summary

Members rallied around the frustration of having a friend who doesn't understand the need for ongoing caution with bacteria after a multiple... Read more

Members rallied around the frustration of having a friend who doesn't understand the need for ongoing caution with bacteria after a multiple myeloma diagnosis, with many sharing that healthy people simply cannot grasp the reality of living with a compromised immune system. Several members described practical protective habits like avoiding buffets, bringing extra napkins to restaurants, and cooking food to order, while others opened up about the emotional weight of 'looking well' while dealing with ongoing symptoms like fatigue, pain, and treatment side effects. A recurring theme was the deep comfort found in this community, where members truly understand that this disease is not something you just get over, and that self-advocacy and self-care must come first.

A MyMyelomaTeam Member

Joy, You can educate the ignorant, but you can not fix stupid. You have to determine which group your friend is in.

July 17
A MyMyelomaTeam Member

When I go out to eat I also ask for extra napkins - specifically so I can set my silverware on one as I've seen tables cleaned with dirty clothes…….ugh!!

July 18 (edited)
A MyMyelomaTeam Member

We often look better than we feel.
This is ultimately a disease where you “Can’t judge a book by its cover”.
Since they do not live with me - My own adult children think this is no big deal. 😔

July 17
A MyMyelomaTeam Member

People can't comprehend the "I'm in chemo/treatment until I die" thing. For them, life goes on as usual, so when they see us, they think we're back to normal too. I can't tell you how many times people say, "Are you still doing that?" Sheeeeesh. Yes, because it is just so much fun. We're either dead, or we're okay. Unless they have MM, they just don't get it.

July 20
A MyMyelomaTeam Member

Since my son was born and for the last 38 years, family and friends think he looks great and will never need heart surgery again. They even told me when he was a baby and toddler to stop giving him heart medicine. It’s been 38 years and my family still does not understand. That’s why we are on the MMTeam, because we understand what MM is. We understand life is never going to be normal again. The MMTeam embraces us, no matter where we are in this journey. From MGUS, to Smoldering, to full blown MM. There is support here that we don’t get other places. I thank God for the people on this site that have given me advice, commented on my questions and advised me on what to do. I’m currently waiting on blood tests to see if my M-spike has gone up. My IgA went up 70 points. You know what this means, they never will.
Paula🌹

July 20 (edited)

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