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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.
July 16
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Answer Summary

Members rallied around the frustration of having a friend who expects full recovery from multiple myeloma, sharing that the 'you look fine'... Read more

Members rallied around the frustration of having a friend who expects full recovery from multiple myeloma, sharing that the 'you look fine' assumption is one of the most common and painful misunderstandings they face. Several members described practical steps they take to stay safe, like avoiding buffets, requesting clean silverware at restaurants, and being direct with others about having incurable cancer that requires ongoing care. A recurring theme was the deep comfort found in this community, where members truly understand that looking well on the outside does not reflect the daily challenges happening on the inside.

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

After 8 years in treatment, people tell me I look great. When I tell them I’ve lost 30 lbs, down from 170 to 140 lbs, and I’ll them it’s all muscles I’ve lost, that I used to do weight training, and be muscular. Then I tell them the ongoing side effects, fatigue, light headedness, diarrhea, muscle and bone pains, weakness, unsteadiness (instability) lack of sleep, etc. I’ll tell them, I now have heart problems, and am in heart failure, with more medications, that make me feel crappy. At that point, they start to understand, it’s not about looks.

July 19 (edited)

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A MyMyelomaTeam Member asked a question 💭
want to share a little update about my journey. Recently I went for a CT scan of my lungs, and today the doctor explained the results to me. They found some changes in my left lung compared to before. There are areas where the lung lining looks thicker, and a small mass in the lower part of the left lung has grown a bit since my last scan. Because of these changes, the doctors want to do another test called a bronchoscopy, where they use a small camera to look inside the airways and take samples to understand it better. Hearing all this was not easy for me. It made me emotional because it feels like one thing after another. But at the same time, I am thankful that I am already under medical care and the doctors are taking steps to find out exactly what