Boyfriend/family not supportive

[Cosmojo]

Hey,
so I feel terrible saying this, but my I feel like I've been sick for so long now that my family and boyfriend have just stopped taking it seriously. They do care I know it, but just cause I've been this sick before doesn't mean it hurts any less or that I'm more capable of being productive.
I've tried to say this to them but they just seem offended or go "well what do you want us to do about you being sick" and just get upset. arg.

 

[Jennifer]

Sorry to hear that you're having a rough time right now. Its a common issue that pops up here on the forum unfortunately. I've had the same problem myself. All you can really do is do the best you can everyday and try to understand where they're coming from. People on the outside looking in have a rough time too because a loved one is suffering and they can't really do anything to make you better and over time that gets frustrating.

My parents used to go to the ER with me all the time whenever I was having issues and the last time they just got tired and went home and left me there with my now ex boyfriend. I thought what happened to the concern and the caring? I know now that its taxing on them to always be around when you're always sick. Everyone needs a break.

My ex on the other hand was just a jerk in general and would say stuff like, "you're always sick." Ya, I can't help that. In time you'll learn who really cares and who doesn't or can't handle it. Remember that this is temporary and that you will get better. We're all here supporting you every step of the way. *HUGS*

 

[Jennifer]

Hey Cosmojo I see that you requested additional support. There might be some good info in a couple of the threads floating around right now about friends and family members not being very supportive. It could very well have a lot to do with a lack of understanding. You could try giving them more information from either a brochure or other reading.

There's this link that gives great info on what Crohn's is along with treatment etc: http://www.ccfa.org/what-are-crohns-and-colitis/what-is-crohns-disease/

Then there's this link where you can download and print out brochures to give to people if you want (there are different ones for children, parents, teachers etc): http://www.ccfa.org/science-and-professionals/programs-materials/patient-brochures/

How have you been feeling lately both physically and emotionally?

 

[SarahBear]

I'm sorry you're having a tough time.

It can be extremely difficult for others to understand what we go through with our health. If they don't have a very good understanding of the disease, a lot of our symptoms can seem unrelated to them - so they're likely assume we're exaggerating or making it up. It just doesn't make sense to them that our stomach problems would cause joint pain or fatigue, until you really look at the illness and understand what it does.

Is it possible that this might be a contributing factor? If so, educating them might help. Tell them exactly how you feel, what your symptoms are, and how the disease causes those symptoms. It might help them to understand.

Also, it might help to sit them down and explain to them what you need from them. You're dealing with some difficult stuff here, and chances are they know that. They might be frustrated because they have to see you sick and know there's nothing they can do to make you feel better. People often shut down in that situation - they feel like they can't be helpful and it hurts them, so they try to ignore it. If you tell them that their support and understanding makes a huge difference to you, it might change that. Just let them know that you need to vent sometimes - that doesn't mean you're expecting them to fix it. You just need to let it out.

Basically, I think communication is key. It seems like they want to help you and just don't know how.

I hope things get better for you soon!

 

[BigMike]

SarahBear crushed it.

Full disclosure and airing everything out will make people realize that you are dealing with something they NEVER COULD.

If they knew what a day in your life was like, they'd change their tune post haste!

Instead of having your illness push them away, have it endear you to them by making them understand. The caveat being that you ALWAYS put the bravest face on you can muster!

 

[Cosmojo]

Thanks all for the suggestions.
I know the issue, my family is really hands off, like they love me to bits but they don't show it in the be there for me sort of way. I've talked to them about having more support but they just ask me how I'm feeling more often. I don't want more pity, I want action! they told me they just don't know how to do that.

On the boyfriend side of things, we have been together a long time, and I know that he cares about me. I just never see it in action, if we have to spend time apart and I'm not feeling good he always says he wishes that he were here, but when we are together he basically just tells me to go rest and then leaves me alone. I tell him I want to talk about it or ask him to do something and he just gets annoyed. I know he doesn't believe I'm really that ill, my doctors say they know I'm sick but my test results keep showing little to nothing.

I love all of them, I just don't know how to relate my Crohn's with my relationships I guess....

 

[Adam1971]

I have a pretty similar time with my wife. She is angry at me about the way crohns has negatively impacted our life. I am simply not able to do what I once was able in our family and on our farm, and we have 2 little children. She gets mad when I have to sleep a lot, or when I don't have the energy or feel well enough to help out. It sucks. I want to say not nice things when she expresses these feelings. But I usually just ride it out.

 

[BigMike]

I have a pretty similar time with my wife. She is angry at me about the way crohns has negatively impacted our life. I am simply not able to do what I once was able in our family and on our farm, and we have 2 little children. She gets mad when I have to sleep a lot, or when I don't have the energy or feel well enough to help out. It sucks. I want to say not nice things when she expresses these feelings. But I usually just ride it out.

This is 100% none of my business, but I would suggest talking about it. Eventually there may be nothing to ride out on.

 

[FullM3lt]

I feel for you, cosmojo. My parents/family are very supportive but they don't seem to understand the physical and mental toll these diseases can take on a person. My parents/families mindset is "oh it's just stomach pain" when that's far from the truth.

There is a forum full of people here that understand what you're going through, so don't be afraid to vent.

 

[whiteout]

Coming from a person that is married to a Crohns patient. Don't be discouraged about you parents not giving the support that you need. Seeing our loved ones sick strains us a lot as well. In my case I feel helpless when I see my wife swelling after eating due to a mutation in her intestine due to crohns. You may not think that they care, but they do. I find myself upset and down a lot that I have to see my wife in pain so much, but it is a disease that I may not have myself but feel like im living with it as well. Your family still cares about you, but they may not understand everything that you go through. My wife vents to me all the time and I allow her to do this because it her way of letting out steam due to her frustration with it. I agree with everyone’s advice talk to them and explain to them about the support you need. It will help

 

[EmThom7990]

I can honestly say, I understand your pain. It is so hard to feel like you don't have any support at home or that you are a burden to everyone else. You need some really good friends. Also, you need to take your family and boyfriend to a doctor visit. That always puts things in perspective for my family. Plus, you have this community here on these Crohn's forums to support you.

 

[rygon]

have you told them how you feel??

ive had exactly the same with my family and friends and unfortunately they didnt see it as serious until i had to stay in hospital. maybe some of these sheets will help ppl understand what you are going through and how serious it really is http://www.nacc.org.uk/content/services/infosheets.asp

best analogy i have is "how do you feel after food poisoning/ 24hr bug.. thats what we deal with every day"

 

[TwinkleToes]

I'm so sorry to hear you are going through this. I can definitely say i'm experiencing the same thing - people just don't understand. It's typical society, unless it actually happens to them, people can not relate.

Try to keep your head up, and try to find support from those who understand and care.