How do you feel understood with a rare diagnosis?

I am writing for my partner who has stage IV metastatic colon cancer spread to the peritoneal cavity (peritoneal carcinomatosis). I asked him the question and his only answer is,”I don’t feel seen.” I can attest to that-his friends have kind of disappeared and no one calls or texts. Not even his brothers.

I’m feeling the same thing , people say they want to help , but I’m feeling like they are afraid to be near me . If you know what I mean

So sorry you're feeling this way. My story - I'm 14 months into this journey with Stage IIb. Requested a chemo consult even though was assured surgery was all that was needed. Long story short - opted for 6 month of daily oral chemo "in the interest of utmost caution" and still developed another tumor in a fatty area outside the colon. At least it wasn't in an organ, so I feel fortunate. Another surgery and 30 rounds of radiation therapy supported by more oral chemo and now waiting for another CAT scan in August. This being said...I think some folks just don't know what to say/do so contact is avoided. My attitude may well signal how others respond to me. Hard as it is and scared as I can be at times, staying visible, proactive and optimistic as possible seems to relieve/assuage others and make it safer for them to approach me. Personally, I hate the solicitous "Ohhh, how arrrre you feeling you poor thing" attitudes/comments. If I make someone uncomfortable about their own mortality they should probably avoid me. Only good thoughts and treating me like a person, not a disease, are welcome!

Amen 🙏🏿👼🏿❤️

I can honestly say from the date of diagnosis of stage 3A invasive squamous cell carcinoma of the anal cavity in late March 2025, I have had a huge support system. This has helped me be optimistic, trusting God, and positive vibes only people find it easier to approach me too.

Finding understanding with a colorectal cancer diagnosis can feel challenging since it's often not discussed as openly as other cancers. Many community members have found comfort in connecting with others who truly "get it" - whether through online support groups, working with healthcare teams experienced in colorectal cancer, or simply having honest conversations with trusted friends and family about what this journey really looks like.