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some days are too much
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JavaMamma27 posted:
The same week I was diagnosed with Crohn's disease, my Aunt was diagnosed with a terminal form of t-cell lymphoma. Because of the magnitude of her diagnosis, my family had concentrated on her condition and treatment. I am left with little support from my family. Because they feel hers is more seriou (and it is), I am left to cope with my disease almost on my own. If I complain, I am reminded that I should be thankful I am not dying also and to "put it in perspective". My mother refuses to see what all Crohn's involves. She is hesitant about my going on biologics, and doesn't seem to see why they are needed. She also can't admit that i have any damage to my digestive track. I know she has ALLOT to deal with- it is her sister that is terminaly ill. But when she constantly tell me how she needs to save her time off to help her sister- I feel like I can't ask her for any help while I am getting treated. On top of this, my Mother-in-Law had a hip replacement 3 weeks ago and is also unable to help at all. My father lives 90 miles away and is paying for the GI specialist I see (b.c his wife works for him). This is a HUGE financial help since I do not have insurance. And I can't ask them for day-to-day help b.c they live too far away.

I feel very alone. And I feel very isolated. My friends that live near-by have their own issues- one has a disabled 7 year old and the other is in recovery for pain med abuse and has 3 kids of her own.

There are many days I can't get my daughter to preschool. The 15 minute trip out of the house is too much.

I feel like since my Aunt is terminally ill, my health and treatment is very low priority for my family and b.c they are all focused on her I am left to deal and cope with all this alone.

I have many days where I just sit and cry. It is all too much. I feel like my family has enough to deal with and that my issues are mine alone to deal with. And I feel very hopeless. I don't have the support system I need. I feel like those close to me just don't have any support left to give me. In 3 weeks, I have had no one in my family call to see how I am feeling- even though I had to leave thanksgiving dinner (that I cooked) to go to the ER.

I know this is whiney, I just wish this stupid disease would go away.

Steph
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miserable_sob responded:
Stephanie, I understand how people can have too much on their minds yet have no clue about the kind of hell you're going through. I don't know about Crohns but from what I went through with Ulcerative Colitis, I'm sure it's capable of killing you if proper medical care isn't applied.
 
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arbob5 responded:
You're not whiney, so don't worry about it. We all have good days and bad days, and when they're bad, it's horrific for all of us. But, we can get through it. We really are a lot stronger than we think we are, so please,don't be so hard on yourself. I'm sure your family has no idea how difficult a time you are having. Let them know, and I'm sure they will have a lot of questions for you. Don't hide what you're going through.

And remember, we're here for you. Keep that in mind at all times. Unload on us....we have broad shoulders and can help you weather any storm you might be up against.

Hang in there and Merry Christmas. Things will get better for you, I just know they will.
 
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cook1958 responded:
You know what, unless someone is walking in your shoes it is hard to understand. Fortunately, we have all been there. It is not easy and it is a fight to find the right meds. Keep fighting, most of us have taken a long road to find the right meds. You are your own best advocate.............we are here to cheer you on.............good luck and we care.
 
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sheba_q responded:
I agree with what everyone else has said. You have a family on here and not only do we know what it's like to live with colitis/Crohn's, we also know what it's like to be surrounded by people who don't get it.
 
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shanna_02 responded:
You post broke my heart! Its so true that we never know what someone else is going through. Your not whiney or being selfish. It is not your fault that you were both diagnosed at the same time. Yes your mother has a lot on her plate, but she will not be there for you unless you tell her how you feel.

Your mom has a lot on her plate, but you need your mother. Your aunt has a terminal disease, but you need your family. Your friends have their own problems, but you need your friends. Talk and listen to them all in turn. If friends are your friends they will listen and talk to you no matter what. Do not make every conversation only about you, but you need to let them know how alone you do feel. Even talk to your aunt. She may be sick, but she may be the perfect friend for you during this time. Do not let everyone else's problems put you down and make your seem minimal because they are not. Physically and mentally you are having a heck of a hard time right now and let them know that you do not need every second of every day, but that you do need a support system. Tell you mom that you do not need her there for each doctors visit. You need her there on occasion to support you and help you.

I do not know everything and I do not want to pretend to. I just hate to see someone put down and no one else listening to that voice. You have a serious medical condition and that should be toward the middle of the totum pole with your family and friends not the part of the pole that is buried and forgoten.


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