Crohnie phoney?

[sbkn]

So, after what I now know to be Crohn's disease due to a 5 month (and still on-going!) flare-up and multiple hospital appointments, I think I may have just found somewhere where people are on my wave length?

This isn't what I thought it was going to be... I'm an organised, motivated person and yet, these past 5 months I have zero motivation and feel like I am spiralling out of what I had been in control of; my life! Everyone says they understand what you're going through and others, more annoyingly, say "you look fine" and I don't know what I find more frustrating?

No one seems to get what Crohn's is and what it entails, instead just thinking i'm over dramatic and a phoney and to be quite honest, i'm getting fed up of pretending I'm alright to people; I just want to curl up in a ball and be on my own. This pain is inexplicable and I feel like no one other than fellow Crohnie's will ever really understand not only the physical pain, but the mental and emotional exhaustion that comes with it!

How do you all cope with this? (I find myself getting stressed with people when I explain what is going on inside me and them not understanding or more to the point, not wanting to understand and waving it off with a "you'll be fine" - leading to worsening flare-ups, i can't win haha!)

Give me some insight fellow Crohnie's, we're not phoneys!!

 

[ZombiePenguin]

Aha I was on pred at the start of my diagnosis and quite temperamental, I used to just tell people off but since being off of that, I know what you mean. It's absurd because you realize that everyone handles IBD differently and go through different experiences, but I find it almost hilarious when they try to compare diabetes or guilt you with a comparison to cancer and you just want to throw a book at them. It's just not the same.

Get this. One of my stepdad's relatives recently claimed he had what I had when he was 15 without realizing he was talking about a lifelong illness. I feel like some people have no empathy and, while the depression and anxiety seem to be fairly common for this disease, I find myself rationalizing as a coping method. When explaining what's wrong with me, I find myself often having to use bizarre metaphors and even then, sometimes the only way is an emotional break, or at least that's how it's been for me. This is an enigma I simply haven't been able to figure out, because even people living with you try to sympathize and they don't realize you don't want sympathy, you want understanding and a bit of companionship so you don't feel so alone in what you're going through.

 

[sbkn]

Someone who understands, i knew it was a good idea to join on here!!
That is precisely what I would like, sympathy isn't necessary, we deal with it in our own way - but, understanding is a whole different thing that is needed!
I never realised how lonely this could make you feel and I think it's because no one seems to understand that I feel this way - even my mum, who I absolutely adore and is there for me in any way i need, doesn't fully understand how I'm feeling!

I'm thinking of joining Tai Chi to help me de-stress and try and get out a little more by doing something that isn't too testing (as much as I'd prefer to get back into the gym properly!!)
Do you do anything/activities to help you feel less lonely? I just feel so up and down and that frustrates me even more because I just don't know how to control it!

 

[ZombiePenguin]

Tai chi sounds interesting, my parents keep trying to talk me into meditating. To be honest, I find it incredibly relaxing to be around animals and away from people. Horses, dogs, bird, fish, whatever you name it, they calm me down pretty quickly. Probably because I don't feel so judged. Dogs especially, that's endless adoration there. But I do write a lot or sketch as a manner of venting to myself when I get emotionally frustrated. I find it's better for me that way, nobody has to undertake my stress and at the same time I can work with what I'm feeling.

Physical activity has surely been a question for me. Unfortunately, my IBD shakes up in a heart beat and lately I haven't been able to get into a car without having to stop in seconds for a bathroom. I do like cooking and gardening though, as boring as that sounds. I actually like being able to have control over something for a change, even if it's whether the hashbrowns burn or not ahaha.

My doctor told me straight out that I would have trouble with anxiety and depression, although I've wondered if I don't have a more severe issue with anxiety than what the IBD should relay. I find it best that when I'm down, I force myself to spend time with someone, whoever it is. It's just healthier that way, being involved with something. And if people around you can't understand the IBD part, I try to go back and forth to find a starting ground they can relate to, so that I at least don't feel annoyed feeling like I have nothing to discuss and relate on.

Unfortunately, it feels like such a hit and miss strategy to find what makes you feel best. Ultimately the best method is to just make sure no matter what your feet are still moving. So long as you don't stay still, something better has to happen. Or at least SOMETHING has to happen <.>

 

[joeyme1]

Sometimes I get weird forms of sympathy from friends. Like, "I have IBS and it is bad. But, my doctor tells me to be happy it's not Crohn's, because that's way worse."

I've gotten many forms of statements like that, either directly or comments made to my wife. She says that they're just being sympathetic, so I don't get angry. But, it still bugs me a little.

 

[sbkn]

yes! i get that a lot of people don't get what it is and so they probably don't know what to say, but it does bug me!

I guess maybe i have to get over myself a little bit and accept not everyone is going to understand, but its nice to know that I'm not the only one feeling this way!! :hug:

 

[shamrock15]

Zombie - go hang out with the animals! I think that finding an activity like that is key to dealing with this disease. You need to find something to root yourself. It does become easier to deal with when you regain some focus.

It really is a hard disease to try to explain to someone. I started once by saying my stomach felt the same way as after a long night's drinking and I start getting hangover remedies from people. They just don't get it and likely never will. While I honestly hope none of them ever get to experience it, it would be nice if they could find a "simulator" like when they hook up guys to TENS machines to help understand a woman's labor contractions.

 

[Cat-a-Tonic]

sbkn - in terms of explaining things to people who don't understand - some of us have found success with having our friends & families read The Spoon Theory. It's an essay written by a woman who has Lupus, so it doesn't pertain 100% to what we go through, but in terms of the energy drain in particular, it can be a helpful explanation. Here's the link:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

(Full disclosure, most people in my life still don't "get it" after reading that, but my dad actually read it and seems to understand as much as a non chronically ill person can understand - he's the only person who asks me how I'm doing, and when I automatically say I'm fine, he says, no really, how are you doing really? He's the only one who actually means it and isn't just being polite when he asks how I'm doing.)

It's my experience that most people just can't wrap their heads around being ill for life. My husband was one of those for awhile - fortunately (for me, not so much for him) he ended up with impacted kidney stones - his doctors didn't know they were impacted, so they took a "wait and see" approach to see if my hubby's stones would pass on their own (spoiler alert, they didn't). So my hubby was in pain, vomiting, miserable for 6 months until they finally let him have the laser surgery to blast out the stones. He had to cancel plans at the last minute due to his symptoms, he spent a lot of time in the bathroom crying in pain, his symptoms could come on at any time out of the blue for seemingly no reason. Sound a bit familiar? Yeah, he became a LOT more understanding once he got a taste of what my life is like.

Long story short, no, you're absolutely not a phony! It's just a really difficult thing for people to wrap their heads around if they haven't actually lived it.

 

[sbkn]

Zombie - go hang out with the animals! I think that finding an activity like that is key to dealing with this disease. You need to find something to root yourself. It does become easier to deal with when you regain some focus.

It really is a hard disease to try to explain to someone. I started once by saying my stomach felt the same way as after a long night's drinking and I start getting hangover remedies from people. They just don't get it and likely never will. While I honestly hope none of them ever get to experience it, it would be nice if they could find a "simulator" like when they hook up guys to TENS machines to help understand a woman's labor contractions.

Thank you, trying to do just that but it's such a slow process isn't it? I find myself planning out a list of things i'd like to do in say, one day, and yet I only manage to do one or two of those things - super frustrating!

Haha, i've also explained it as that before, trying to simplify it for people but nothing seems to work!! Doomed!!

 

[sbkn]

sbkn - in terms of explaining things to people who don't understand - some of us have found success with having our friends & families read The Spoon Theory. It's an essay written by a woman who has Lupus, so it doesn't pertain 100% to what we go through, but in terms of the energy drain in particular, it can be a helpful explanation. Here's the link:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

(Full disclosure, most people in my life still don't "get it" after reading that, but my dad actually read it and seems to understand as much as a non chronically ill person can understand - he's the only person who asks me how I'm doing, and when I automatically say I'm fine, he says, no really, how are you doing really? He's the only one who actually means it and isn't just being polite when he asks how I'm doing.)

It's my experience that most people just can't wrap their heads around being ill for life. My husband was one of those for awhile - fortunately (for me, not so much for him) he ended up with impacted kidney stones - his doctors didn't know they were impacted, so they took a "wait and see" approach to see if my hubby's stones would pass on their own (spoiler alert, they didn't). So my hubby was in pain, vomiting, miserable for 6 months until they finally let him have the laser surgery to blast out the stones. He had to cancel plans at the last minute due to his symptoms, he spent a lot of time in the bathroom crying in pain, his symptoms could come on at any time out of the blue for seemingly no reason. Sound a bit familiar? Yeah, he became a LOT more understanding once he got a taste of what my life is like.

Long story short, no, you're absolutely not a phony! It's just a really difficult thing for people to wrap their heads around if they haven't actually lived it.

Thank you, I will definitely take a look and show my family! That's really good to know as you can just tell can't you, when someone is simply being polite!

Wow, some might say a blessing in disguise in terms of his understanding towards you, but that's not to divert from the pain your husband was in - awful!

Thank you for sharing

 

[teeny5]

Mostly I don't try to explain it to people, but I have said something like:
-My body is attacking itself in the digestive tract. I only have it in the large intestine so that is where I have ulcers and inflammation. It causes a lot of pain daily and makes me not want to eat because that causes more pain.
Basically a short, general explanation with little detail, but they seem to get the ulcers and pain part. When they give weird comparisons to something they had once (like a stomach flu or IBS) I just say no this is a little different and there is no cure. I don't argue with them, and try to dismiss dumb comments. Some people will never get it, and that's ok. I have had many home remedies given to me...I just politely say thank you. All in all I find if I keep it short and simple they don't ask much more about it...which is what I like.

 

[Greeko]

I've had this illness for 15 years now and I've always considered it as torture in every single way possible, mentally , physically and emotionally. The one person that upsets me the most is my dad. He is a very stubborn person that never understood my condition. He never asks me what it is exactly and when I try to explain it he thinks it's contagious. When I'm stuck in the bathroom for hours I just pray he doesn't need to go because then a yelling match ensues because he has to take a wizz and I have to get out. It's very upsetting.

 

[NJZen]

I can sympathize, until I lost about 30 lbs and ended up in the hospital for surgery I don't think what I was going through was taken seriously. Now it's my fault for letting it go so long. Just can't win sometimes. :ybatty: