Dirty little secret

I hid my disease from everyone. What am I saying,,, hid... I still do- I hide my disease from everyone. Well I let people know I have it, but no one knows when I'm suffering. I don't know what it is... I find it impossible to tell people I'm sick without quickly sayin... "but it could be worse", "but I'm ok", "it's no big deal you can still depend on me", "it's nothing, really". I don't know why I can't be completely vonerable and let people know it's not ok, and I'm scared.

I'm a 25 year old divorcee and mom to the world's most magnificant 3 year old little boy. My ex and I get along WONDERFULLY. We are truly better friends divorced than married- but I digress...

I secretly suffer. I'm scared but yet I put on a smile to everyone. I have awful anxiety and panic attacks because of medication. No not a side effect from them - it's more like - I HATE taking them because I was seriously traumatized by one of my dr's that first treated me for crohn's. He didn't have a clue how to treat me but I was stuck with him since I was in the air force in a remote location. It was so bad, he said... "hmmm I don't know - let me go google it". He treated me with high high doses of prednisone. It was 13 months of pure hell.

At, one point I complained because my lower neck always pulsed and hurt when on prednisone. My dr told me it's a side effect reffered to as a "buffalo hump". I burst into tears when he told me. I cried back to him, "first I get fat like a buffalo, hairy like a buffalo, mean like a buffalo and now I get a hump like a buffalo! Next you're going to tell me I'm going to grow horns and a tail!!! I can't take it anymore!!"

The only time I've been completely free to express my feelings has been inside the dr office, but it doesn't change anything and of all people they are supposed to be the one's to help me make it through. I guess I don't tell people about my real feelings because no one can "fix me" so why bring it up and I also don't want to be known as "THAT poor girl with crohn's" or seen as undependable because my disease flaring up.

Sometimes I stop taking my medicine because I want to feel like a normal 25 year old. Plus I get away with it for a short period of time (as in, I don't get sick). Then enevidibly I get sick. I don't call my dr because I know it's my own fault i'm sick. how can I rationalize taking an apt with him when it's my own fault? The patients who DO take their meds like they are supposed to deserve to be seen over me... cause all in all - it's my own fault I'm sick. Then also I'm terrified of steriods... terrified. My hands shake and my pulse races just thinking about it. (wow I'm a total whack job):ybatty:

I have a wonderful dr now, and he knows I'm really anxious about my disease so instead of trying to scare me straight into being a "good patient", he's calm and forgiving. He even writes my hand written letters just to check in on me so I won't feel pressured by an accusitory phone call or office visit. I really appreciate it, but still I can't get on track. Taking 16 pills aday is physically hard for me to pick up the bottles and just do it. I think need to finally seek conselling. I need to get better for my son. He needs me. Ugh I hate Crohn's!!!! :ymad: :ymad:

For the past 3 months I've been bleeding so much along with mucous and loose bm. I'm scared. I've mostly been taking my meds EVEN prednisone ever since,but its just getting worse. I have a "double header"(endo/colonoscope) :lol: scheduled for next week.

Well thanks for listening. I appreciate it - especially since you know exactly what I'm going through.

Jessica, I think we all feel like this sometimes, I know I do.

It's hard for people to understand how we feel, it's constant, none stop.
I reacted very similarly to you, in that I don't tell people how bad I feel. Sometimes I think they'll just feel sorry for me, or think that I can't cope. Worse than that, I've been known to tell my Doc that I feel great and nothing is wrong with me, when I'm in pain.

I don't know why I do this. I really should get my head sorted sometime.

You have a lot on your plate, with bringing the 3 year old up alone. this is another headache to deal with.

Talk to your Doc about how you interact with other people, with regards to your Crohn's. He might be able to help you.

Also, enjoy this forum. It can be a constant friend that you can talk to. We are all in the same boat.

hi Jessica - welcome

aw i am sorry to hear you're having a hard time just now. i can commiserate with the anxiety aspect of things, as well as not wanting people to know about your illness... and i also have the stigma of being 'the poorly' one, and hate it.

but over the years i've come to accept that this is me - with Crohn's & all the other issues i have - and i've become better at sharing what's going on, with some of the closest people in my life. not everyone, i may add, because i don't think everyone needs to know. i weigh up who to tell, on my gut feelings regarding whether i trust them enough.

maybe you could do with some support as in a course of counselling, to get some of these issues aired and receive help in how to deal with your feelings...?

good luck with the double whammy next week let us know how you get on.. and, we're here for you!

Hey Jessica,

Am so very glad you found the courage to post here with us... ((huge huge hugs))

You are most certainly not alone on the getting fed up taking meds all the time and its one we all face.

The emotions of pred, the emotions of trying to stay upbeat with your 3yr old who is your pride and joy, the emotions of struggling and feeling very isolated with crohns are a huge burden and most certainly one you can share with us here honey.

Having struggled for years thinking I just had "a touch of IBS" until I was on 60mg pred and running to the loo 12-14 times a day and not making it to the loo in time was a mountain I had to give up climbing. I realised one day I was making a rod for my own back by insisting that I could cope Jessica and finally blurted all out to my GP who then went about sorting me out with a good GI etc.

Something for you to think about is the help is out there - just by coming here you will find relief for a start - but its up to YOU how much help you ask for, when you ask for it and also its about looking at how it will help YOU to live your life with a sparkle rather than struggling through a depression constantly.

Recently I have applied for a parking badge to help me get about and also for some benefits which might aid me to reduce my working hours and so improve my health. For a long time I felt like I was "giving in" to crohns and it was winning. Then I realised I wasnt giving in I was adapting to live with a decent quality of life!

As you will find and fight to achieve there is more to you than just Crohns but acknowledging it Jessica is about saying "yes ok you are giving me grief" BUT "here's how I will manage you so you dont dictate my life to me!".

Reach out Jessica, reach out to us here, talk to your doc, is there a specialist nurse who can support you? have you joined your local Crohns society?

Keep posting honey, keep asking, keep talking ok? Go for that counselling - some places have counsellors that specialise in IBD so something to look into.

We will always listen, try to help and be there to rebound off whether you are having a good or a rotten day.

Hang in there Jessica things will improve honey. ((hugs))

welcome Jess,

pleasure to have you with us here.

hi jessica, welcome to the forums! i mean, it sucks that you have to be here... but we're happy to have you.
it's pretty common for people with IBD to hold in their emotions... but holding it all in just makes the stress grow bigger and bigger. and of course, as you may have read, stress can trigger all kinds of symptoms. everything you describe totally makes sense, having a chronic illness with no cure is very scary and frustrating! it's a struggle, for sure. but it's never going to go away, so let's find a way to deal with it the best we can!

i can relate to a lot of what you say (i'm 26, currently going through a divorce, lots of side effects from drugs, fear for the future, and feeling like a big fat hairy buffalo... ;P), so i hope that we can support each other and make life a little easier. how long have you been diagnosed?

you're not a whack job - i'd say your feelings and reactions are pretty normal! glad to hear you have a good GI now... have a team in place and use them to your maximum advantage... a GP, GI, nurse, counsellor, your family, friends and your local ccfa/ccfc chapter... educate yourself, learn about the different treatments available. ask questions. try not to worry about what others think... (easier said than done, i know!) a lot of us are ashamed to have this disease, but if we all hide away and never talk about it, it doesn't move us forward. not that i am saying everyone needs to know all the details... but clue in the key people so that when you are sick, you can give yourself permission to take it easy and get better!

Hi Jessica, and welcome.
I bet that felt good to write all of that out huh?
You said it yourself - you need to get well for your son. I never used to like taking pills, even a Tylenol before Crohn's. But now I would rather take 50 pills a day if it meant I felt healthy. I hated taking my Humira shots but every time I did, I said "I'd rather do this every single day than be as sick as I was." Even though it was one little shot every 2 weeks - doing it every day would be worth it. I didn't want to start taking Remicade - it scared the hell out of me, but I am SO glad that I ended up doing it.
What meds are you taking now?
Haha - double header - good one. I think someone here once said "If they use the same scope, I hope they do the mouth one first!" Get it?
Good luck with your appt next week - let us know what they say.

Hi Jessica and welcome!

Aside from the divorce and being told I have a Buffalo Hump (nice), I can totally relate to your post. I am constantly telling people that I feel fine when I don't, even my doctor, like Danman said. I try to take my meds, but when I start to feel a little better I slack off and then I feel guilty about calling my doc because I know I wasn't taking my meds like he told me to. I think all of this stuff boils down to wishing I did not have this disease and subconciously thinking that acknowledging it legitimizes it and ignoing it may some how make it go away. I have two very unhealthy parents and I have spent my whole life obsessing over what I eat and exercise and trying to be healthy so that I don't follow in their footsteps, yet here I end up with something that I can't control and it drives me crazy!

I wish I had some great piece of wisdom to offer to you to make it easier to cope with your situation. Even though I don't, I hope you can find comfort in knowing that you are not alone in the way that you deal with your disease and there are plenty of others here that know exactly how you feel. I hope that you find some answers to your questions that may help to calm some of your anxieties. this forum has done a lot for me and I hope it does for you too!

Welcome to the forum, Jessica
I'm a big fat hairy buffalo without the pred... sigh!!!

Glad you found a better doctor.
Prednisone made me extremely moody too, and I'm a guy...

welcome to the forums, I don't like any conventional medicine so we are in the same boat

jessicajoy7 said:

I hid my disease from everyone. What am I saying,,, hid... I still do- I hide my disease from everyone. Well I let people know I have it, but no one knows when I'm suffering. I don't know what it is... I find it impossible to tell people I'm sick without quickly sayin... "but it could be worse", "but I'm ok", "it's no big deal you can still depend on me", "it's nothing, really". I don't know why I can't be completely vonerable and let people know it's not ok, and I'm scared.

Click to expand...

Sounds a lot like myself.

Hang in there. I know it is hard to not let the disease consume your mind. I usually find a distracting activity & immerse myself in it. Then nothing else matters. (may not be the healthiest way to cope but it works for me)

Counseling has also helped me too.

Having bad days can make us appreciate the good days more.

I can really relate to your comments. I'm not really the kind of person that shares things easily. I guess I don't like people to see that I'm vunerable in any way. I don't want anyone to feel sorry for me.

I'm pretty new to this but most of the time I feel like I have to fight this thing and just keep going. Because I'm afraid that if I give in to it even for one day (when I'm feeling like crap) and then have a worse day, I won't be able to cope.

I've even kind of been hiding this from my husband. But I've started to tell him more about how I'm feeling too, when I'm feeling good (today's a good day, by the way!) and when I'm not. I've started telling friends as well and I think it helps when people know - and it becomes less of a dirty little secret.

Thanks to all of you!! Your words of encouragement and understanding is refreshing and totally appreciated. Thanks for welcoming me to this site-I feel it's going to be a beautiful connection.

It always is here

Welcome to the forums Jessica. I hid my agony for a long time. Telling myself that I was doing it to myself and that I can handle it. I didn't want others to think I was overreacting or being melodramatic. I didnt' feel comfortable talking about it till I actually knew what was going on myself and started to feel better. I truly felt like a crazy when it all first happened. This forum is my second family. Here I have found others that actually know what I am going through. This forum has been my therapy.

All of your encouragement has helped me open up about my Crohn's. It's scary for me because I'm in CA and all my family is in the Midwest. I have a 3 year old son. So if I get sick or need a procedure done...I need help. So I decided to open up morewith my friends and even coworkers. Most everyone knew I had crohn's but non of them actually knew what it was and defintely didn't know what happens with a flare up.

There's a walk in San Francisco on the 6th of June so I registered to walk it. I emailed everyone I knew and even stood up at an office meeting (we're a tight knit group) and told everyone about it and gave them more detail as to what the disease is and how I'm affected by it. I looked around the room and about 6 or 7 people were tearing up. After the meeting people have been soooooo supportive and in 1 week I raised almost $1000 for my walk.

For so long I thought people would just pity me so I kept quiet. Now that everyone knows, no one has shown me pity only 100% support.

Like the ccfa.org says... "take steps and be heard".

Let's end suffering in silence!!

Jessica I'm glad you have found us here, I did kinda the same thing except with my close friends because they were there when i first went into surgery. But i'm glad to hear that you are openeing up more and taking steps to let everyone know that you aren't fragile and that just because you have this doesn't mean you are any less of a person. I think it takes more to stand up then be quiet. So be proud that you have taken that step.

Jessica
I'm sorry I missed your first posts I don' know where my head was. I am new to
just got up the courage to write" my whole story" if you get a chance to read it.
It was very hard to let all that private stuff out too. I felt very vunerable. Welcome
I'm glad to tell you this b/c alot of people told me and it made me feel good so Kudos to you for telling you story.
Bethy

A very belated 'welcome' Jessica...
You are among friends here at the Crohn's Forum.

Hugs~Nancy