Community Forum

Hello everyone,

Going to try and keep this post short seeing as I went over the character limit my first go around lol.  
Well, my names Sonny and I was diagnosed with UC in January of 2015 at 23 years old.  I just turned 25, and I'm in my second year of pursuing a doctorate in physical therapy.  

Being open about my diagnosis has been one of the hardest things ever for me.  It took me a good year and a half before I actually mustered up the courage to post about it on social media to officially bring all my friends and family in the loop (it was the only way I knew how to reach out to everyone and I'm really shy/embarrassed about it still).   I've gotten a lot better about it though, and I've received an overwhelming amount of support, which has been wonderful.

Still, since my diagnosis I've experienced 3 months of total complete remission.  I almost convinced myself I didn't have the disease.  Currently, I've been flaring since March which has caused me to lose almost 30lbs in that time:( 

I feel like my life was just taken away from me.  I haven't gone out with my friends in months.  It's so heartbreaking to just have to turn down plans over, and over, and over again.  I just want to feel normal again - so badly.  How am I ever supposed to take a girl out on a date like this?  I hate everything about this disease.  I've been making it a point to educate more people on it.  So many know so very little about how absolutely awful it can be.  And I always feel like such a burden whenever I vent to anyone about it.  Life's just been so hard lately.  

Anyway, I hope to continue to spread awareness about this awful disease.  Just looking for someone else that can relate I suppose.  Thanks for reading.

Thanks so much for the replies raphi and danielle!  

I meant to post a reply much sooner but school has kept me so busy.  You both bring up some awesome points, and I am working every day to try and change the way I react to all the challenges this disease presents me with on a daily basis.  Next Tuesday there's a local support group meeting, and I think I'm finally going to attend.  I've been "meaning" to for months, but I guess I've been too afraid of accepting that I actually need to go to a support group.  The few people I have interacted w/ that have UC or Crohn's, I've immediately connected with.  It's amazing really, and I know I really need to reach out to others that truly know what you're going through.  

Danielle, I'm sorry about the side effects you're experiencing from Humira :(  And I know exactly what you're feeling regarding dating again.  My entire class knows of my diagnosis now, and it's definitely been liberating.  I really believe the more people you let know, the more you'll be surprised to learn that this diagnosis doesn't define the quality of our relationships - even when we feel like a burden.  

Keep fightin' the good fight y'all!  Thank you for your supportive responses:)

Thanks so much for the replies raphi and danielle!  

I meant to post a reply much sooner but school has kept me so busy.  You both bring up some awesome points, and I am working every day to try and change the way I react to all the challenges this disease presents me with on a daily basis.  Next Tuesday there's a local support group meeting, and I think I'm finally going to attend.  I've been "meaning" to for months, but I guess I've been too afraid of accepting that I actually need to go to a support group.  The few people I have interacted w/ that have UC or Crohn's, I've immediately connected with.  It's amazing really, and I know I really need to reach out to others that truly know what you're going through.  

Danielle, I'm sorry about the side effects you're experiencing from Humira :(  And I know exactly what you're feeling regarding dating again.  My entire class knows of my diagnosis now, and it's definitely been liberating.  I really believe the more people you let know, the more you'll be surprised to learn that this diagnosis doesn't define the quality of our relationships - even when we feel like a burden.  

Keep fightin' the good fight y'all!  Thank you for your supportive responses:)

 Reply posted for snye91.

Hi snye91, I'm so happy to hear you have received support from friends and family and are educating people about this disease. I am just starting to feel like I could tell my story now, which is why I started coming to this group for support. I was diagnosed in 2011 and after taking a few years off due to health am in my senior year of college. While I have mercifully been in remission for three years, there's never a time I don't worry about a flare up. Physically I'm experiencing many side effects of Humira. I would like to start dating again, but I worry that I am too much work and that this disease is embarrassing. I hope that I get the courage to tell loved ones, and maybe after that I will feel ok that someone could accept me for me. Thanks for posting!

 Reply posted for snye91.

Ya! I feel just like you do! You have to find the positives in between. Cling to the good in life. All that makes you happy - don't give up on it. Life is a challenge for everyone and this is one of ours.

There are lots of us so stick with us where you can share anything at all because even when you educate people I find it's hard for most people to relate. I think it's because ppl don't understand how far reaching this disease is with symptoms  - not just the obvious embarrassing part but the pain, lack of sleep, arthritis, and many side effects and secondary stuff.

Ride the downs and know there are ups. Some days are worse than others and there can be bad months. Balance and stay true to yourself. Forgive yourself if you can't make it out one night, and then make the most of the next time you do go out. It may not be at a big dinner, maybe now it will be a nice hike. You will have to adjust but there is PLENTY in life to still be happy about!!