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People Who Say to MM patients “ But You Look Okay “

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

I get that alot, Even l look okay on the outside but there are a lot going on inside my body fatigue, immune problems, treatment the side effects and the symptoms.But it isn’t something you can always see and doesn’t mean always feeling okay.
I am dealing with this everyday even with my good and bad days 🙏😒

January 14
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Answer Summary

Members shared the deeply frustrating reality of hearing "but you look okay" from well-meaning friends and family who cannot see the invisible... Read more

Members shared the deeply frustrating reality of hearing "but you look okay" from well-meaning friends and family who cannot see the invisible symptoms of multiple myeloma, including bone pain, debilitating fatigue, neuropathy, chemo brain, and the relentless toll of treatments. Several members described how people misunderstand MM as curable or assume no treatment means no illness, when in reality the disease is chronic and always lurking, with many choosing to simply smile and say "I'm fine" rather than explain the constant struggle. A recurring theme was finding understanding and solidarity within the MM community, leaning on faith for strength, and extending grace to both themselves and others who cannot truly comprehend what living with blood cancer feels like every single day.

A MyMyelomaTeam Member

Blood cancer MM is hidden in our vains. People will not see our pain until they start to understand, go with you to appointment and learn my new lifestyle.
I do not explain much to people or families who keep telling me “you look just fine”.
My answer is always “Glory be to God”

January 23
A MyMyelomaTeam Member

When people say you look good, I normally reply, in a humorous way, I wish I felt as well as you think I look.

February 3
A MyMyelomaTeam Member

Myeloma is a blood cancer, its doesn’t always make you look sick. Looking fine or good doesn’t always mean fine or good or being healthy inside your body. The difficult and hardest parts is that people don’t understand and can’t see, and it’s still effect my daily life

January 17
A MyMyelomaTeam Member

You have a strong family here. We, I can totally relate with where you are in all this. I have become the exact opposite of who I used to be. That is NOT who I want to be. I have always been the person everyone came too for anything. I have always worked more than and harder than anyone I know. Always on the go. Always on time and ready for more. Now I don’t have the energy to put my shoes on. Well AJ everything is going to work out because we are going to make it happen. We are still the same people. I plan to make sure everyone knows that we are. Hang in there brother. This has made us stronger

February 4
A MyMyelomaTeam Member

@A MyMyelomaTeam Member lol! You have perfectly said what I was thinking today! I am meeting some colleagues for lunch and hoping my diarrhea will be quiet long enough to get me there, through lunch and back home. I’m really hoping they just don’t ask, I know they will because they want to be supportive but I don’t want to talk about it, I just want to hear about their lives and think about something else. I don’t want to talk about my exhaustion, my constant back pain and diarrhea and how I constantly don’t feel like I’m fully pulling my weight at work because some days it’s all I can do to get up and try. I’m not one to feel sorry for myself and I certainly don’t want anyone else to either. I’ll say it again - I’m so glad that we have this site because no one else knows or understands like someone who is traveling the same journey. ♥️🙏

February 4

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