Patients Castleman disease
Feeling alone with CD: How do you cope?
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Hi, I haven't been on here in a bit due to the CHristmas holidays. I hope everyone had a happy Christmas despite these strange circumstces...
I guess I'm back on here because I've been feeling a bit alone with CD. Maybe it's the holidays that brought it on, but I feel like people don't understand what I'm going through and some days it can be hard and isolating...
Sorry for whinging, I'm just not in a good place today. Do any of you also feel like this? Thanks for reading.
@PennyLane Hello PennyLane, thank you for opening this discussion and sharing how you're feeling.
Being diagnosed with a health condition, especially when it is rare, can be overwhelming. Sometimes you can feel confused, misunderstood by family and friends and very alone.
How do you all cope when you feel this way? Is there someone or something you turn to to help you feel better? Do your friends and family understand? Are they able to support you?
@Jurdie @Caski33 @Sashvin @Wellemma @Sarahjane79 @friedegg @LukeIan @RhettB @Pibby22
Feel free to share your thoughts and advice with us here, we're all here to support one another!
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Courtney_J, Community Manager, Carenity UK
Hi Pennylane,I have been very fortunate,my husband and family have supported me since my diagnosis in September,also I have an excellent doctor who got me on a 6 month trial of Silltuxabab in October.Everything has gone so well,no side effects and am feeling almost normal,Hope you feel better about CD soon,there is a life to be had with good medication.Good luck.Pibby 22
@PennyLane I don't have CD myself, but I understand, at least from a family member's point of view. No one really outside of our family really knows or understands what it's like so sometimes there are awkward questions or awkward pauses in conversations. It's like people don't know what to say or how to react. You're not alone, please stay strong!
@PennyLane We all have good days and bad ones. You're are certainly allowed to feel the way you feel and are entitled to a good whinge every once and a while! CD is so awful you deserve to let it all out sometimes! I know how you feel, sometimes I feel so fortunate to have a good support system behind me and to be able to come here and talk to others from time to time. I can't imagine how it must be for people who don't have family or good friends. It takes a village like they say. Hope you're feeling better now that things are starting to turn around with the 'C-word' and everything!
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