Feeling alone with CD: How do you cope?

@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!

Take care,
Courtney

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!

Hi pennylane

I hope you are doing better. My husband has CD and I feel like sometimes we are the only two people who know what it is. Before his diagnosis, I didn't have any idea what it was or what it means to those who have it. Now, I know more and can confidently say none of our friends or cashiers in the store, or coffee shop baristas, or other gym goers understand it.

Are you ever worried about relapse or flares? I am constantly concerned about my husband...

Anyway, hopefully you don't feel the same way this Christmas. You are not alone

xx