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Crohn's Disease Forum » Support Forum » Misconceptions about being sick


05-23-2014, 03:20 PM   #1
afidz
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Misconceptions about being sick

The last few months have been stressful and annoying. I have had to deal with family members saying rude things to me or about me to other people. The other night I decided to sit down with one of my sisters. Whitney (my sister) out of all of my family, has been through the most with me, she understands more of what I go through than anyone else so I thought it best to have this discussion with her.

Basically what it comes down to is that my family gets upset because they hear how unwell I am or how tired I am and then they see me post things on facebook about being out with friends, looking forward to vacation or whatever it is that I am doing besides laying in bed.

This frustrates me the most. I am going to be sick for the rest of my life. So I am supposed to live out the rest of my years cooped up inside?? Am I not entitled to at least ATTEMPT to enjoy life like everyone else? And beyond that, what they don't understand because they have never truly been sick...all I want is a normal life. I can't have a normal life so I am trying to pretend. I know my limits, I know how far I can push myself.I know when my body has had enough. I KNOW WHAT I CAN EAT. (and a leafy green diet is not it...)

I have avoided posting about or talking about my vacation next week to almost everyone. I didn't want to hear what everyone has to say. But today I decided I don't really care. I am allowed to go on vacation, I am allowed to forget about how hard my life has become over the last year. Its not like I am going back-packing through Europe. I am going to the coast where I will find myself an umbrella and a beach chair and sit my butt down in the sun for 5 days. Really, its what everyone expects me to do, there just isn't going to be four walls and a roof over me :P
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Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

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Cimzia
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05-23-2014, 03:45 PM   #2
worriedboy
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Enojy your dip in the sun
Of course you deserve like anyone (even more than anyone actually !) to have some time off, a good vacation. It's fun and it's good for your health. Why not ?
Because people in their rudeness keep judjing every moving thing ?!
I think you did well by keeping it to yourself this time; they dont deserve to be a part of it.
And you know what ? Who cares what they say ? The MOST important thing is that you feel the best that is possible. All the rest doesnt matter at all. It's all one big blah blah blah.

Cheers
05-23-2014, 05:28 PM   #3
Saratay05
 
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Afidz
Good for you!
I don't know why, but I often feel guilty if I do feel well enough to go out and do something fun (golf even. I always take a cart and know where all the portajohns are) because I fear judgement of those that hear how crumby I feel most of the time. Considering I have pretty much been flaring for the last 3 years and two surgeries later, I think I need to take a page from your book and enjoy as much as I can. I may just not share it with everyone.

I think you should go out and enjoy every good moment you can! Have a great vacation!
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05-23-2014, 07:12 PM   #4
nogutsnoglory
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That is frustrating because you are entitled to those things both in hope and in actual manifestation. Can you voice this to your family and explain it the way you did here? I know people think I'm popular and live a fulfilling life based off of Facebook. It's far from the truth but do I want to highlight the negative in my life? My close family and friends know the real deal but I want to convey having some sembleance of a life.
05-23-2014, 07:38 PM   #5
DustyKat
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I am so sorry you have to deal with this sort of crap afidz, particularly from those that you would, and naturally so, expect greater understanding. I can safely say that in my case it is why I gravitate to places like this and not the family.

I have the same issues with the extended family. It is almost like, well you know all about it so we wonít bother to research it ourselves but instead continue to ask the same ridiculous questions and draw the same ridiculous conclusions ad nauseam.

I really donít give a f*** about what they say or think any more. If they, or your family, canít (or wonít) understand that this disease is for life, that is waxes and wanes, that it can change from day to day and hour to hour. That like any disease that is for life the physical is but one aspect of it and unless you also nuture your psychological health you just might as well throw your hands up now and say I give in to the disease.

You go on your holiday and have the best time ever hun! Surround yourself by positive and supportive people and donít expect anything from your family, that way you are never disappointed.

WE all understand your excitement and desire to get away and thatís all that counts!

Happy Holidays.

Dusty.
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05-25-2014, 07:27 AM   #6
afidz
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My family problems have since escalated. The end result, had to tell my mom that until she starts treating me with the respect I deserve, she is not welcome in my life. I won't get into it, but what caused it to escalate was so stupid. But whatever she made her bed, now she has to lay in it.
All the stress I have been dealing with with both of my moms (step and biological) has had me doubled over for the last 4 days. I have no desire to eat. I don't want to do anything but just lay around and be angry. The last thing my mom said before I hung up on her was "I don't need this" ...SHE doesn't need this? Because of her, my flare is getting worse. Because of her I lost the happy care free pain free feeling I have had in the last week since starting Humira. Tell me who "doesn't need this"
Anyways, I have cancelled all of my commitments for the rest of the week until we leave for vacation Wednesday morning. I don't plan on talking to anyone other than the friends we are going with because I really don't need this!

I've posted a picture of where we are going, God knows I can't wait another 3 days..south padre.jpg
05-25-2014, 09:06 AM   #7
Saratay05
 
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You go and have an amazing time! Forget about life and the family for a while and enjoy being in every moment. I'm sure it will do you a lot of good to get away.
Best of luck You deserve it!
05-26-2014, 06:43 AM   #8
Axelfl3333
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I feel that a lot of people stick there heads in the sand and don,t really want to to know,understand what a ballache a chronic health condition can be.i feel lucky that in general mine isn't,t to bad but I have episodes of awful which I really wouldn't,t wish on anyone.it probably comes down to people getting bored with someone who is always very Ill not very nice I know,but sometimes people aren,t very nice especially when there ignorant.
05-27-2014, 11:58 AM   #9
valleysangel92
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Urgh family!

You deserve to go and have some time in the sun and to try and have some fun.

As you rightly say, we are entitled to try and enjoy life just like everyone else is. If anything, our illness means that we should try to enjoy the opportunities we have even more since we never know when this will come back to bite us.

I hope you really enjoy yourself on vacation and have a really fun time. We all know you deserve this.

Ps - that beach looks stunning! Come back with lots of stories to make us jealous .
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

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Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-27-2014, 06:52 PM   #10
Ihurt
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I am sorry you are dealing with this. I mean what do they expect you to do, just lay down and die?? I mean you are chronically sick, you feel like crap most of the time. I think it is great that you want to go on a vacation and do something nice for yourself. You deserve it! Maybe it will do a world of good for you, I mean get away from all the stresses and just relax. You do not owe anyone any explanation for anything. You have a right to do what you want without being judged by people who are so oblivious to what you are going through. Go on that vacation, have fun as much as you can! Don't worry about what anyone says, their opinion does not matter...
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