Community Forum

I am recently diagnosed and can not get my spouse or college age kids (living at home) to accept that I need help.  I am sure it is my fault for getting off work (after working 50+ hours per week) at 5 and rushing home to make a home cooked meal each night by 6 pm as well as doing all the cleaning, bill paying, planning vacations, shopping etc.  No one has been to a doctor appointment with me and I cant get my husband to read any information on Crohns.  They just keep saying, "when you get better".  How can I make them understand that I will not get better and this more involved than just having a bathroom close by at all times.  I just dont know what to do.  They are so used to me doing everything for them and they honestly do not understand why I cant do it anymore. Any suggestions?  I think they are thinking that if I am forced to do things that it is some how going to "cure" me.  In truth all it does is stress me out, exhaust me and make me feel worse.  HELP!

 Reply posted for sweetgirlie669.

I ended up divorced.  One reason was my wife used to make fun of my frequent bathroom trips, as well as the amount of time required for each visit.  Far from being understanding, she was downright hostile toward my condition.

 Reply posted for KY Girl.

Look at it this way - by doing everything yourself, you were really doing a disservice to your family.  They need to be able to be self-sufficient, but keep in mind they learned to be helpless, and the process of reversing that will have a learning curve as well.  If you feel good and you WANT to make dinner, or help them out by doing a load of laundry, then fine, but they NEED to be able to fend for themselves.  They certainly will complain, but for their own sakes it is important they learn not to expect things handed to them - life outside your home is not going to work that way!  I'm sorry it took an illness for you to reach this point, but take it as an opportunity to bring about some positive changes for everyone!

 Reply posted for KY Girl.

IBD and other autoimmune conditions are serious.  some people get full remission, some get a sort of remission, and some have to change their entire lives for a different kind of living than they ever expected. You will need to continually re-evaluate your life, roles, expectations, capabilities, even your wishes and dreams and goals. The BEST GIFT THAT CROHN'S GAVE ME:   "GIVE YOURSELF PERMISSION!" It can be applied to anything. Practice it:)
IMPORTANT:  You need to make sure you have a support network of medical providers that are on your side( if not, keep looking) and an emotional support network  - I loved my class Living with Chronic Illness, it gave me a support network that did not have to know the gory details but understood a great deal and just supported and held my hand.  My support network includes my GI, Family practice DR, Chiropractor, Reflexologist, Massage therapist, counselor,  friends, family, and various sites like CCFA, Crohns & Me..... etc. This is a journey for you and your family, and it may take many discussions and family meetings to decide for each of you how open, honest, vulnerable, real, graphic you need to be.  Each person will need to make a choice of how much they can join you on your journey, and what their journey will feel like to them.  Keep asking them to listen, hear, understand, participate, help, be a caregiver, take on new or different roles. keep asking ! They may or may not do what you want.  But then again, YOU MAY OR MAY NOT DO WHAT THEY WANT. Stress makes you sicker.  start a health journal.  start reducing your stress.  Seriously!  Living with IBD is a job in itself!

 Reply posted for KY Girl.

Go on strike and cook them rice and beans until they come around to your way of thinking.

                  Joe

 Reply posted for KY Girl.

Sounds like it is time for a family meeting.    Your children are college age, not infants.  Why not announce during dinner that everyone needs to plan to be home say Sunday (I know it is so hard w/everyone's actrivities), for an important family meeting.  

In the meantime, you will have some time to gather information that you would like to begin sharing with them in order to educate them about your diagnosis (there is lots you can print from this site).   You should also make a list of items that can make your life easier with having somebody other than yourself do it.  

I am sorry if this message sounds stern/abrupt, but it is my opinion that when someone is being taken for granted that the end of their free ride is over!   Good luck

Lizzies Mom

 Reply posted for KY Girl.

I am so sorry to hear that!  I'm not sure what to tell you about that.  The best thing you can do is educate them either by bringing them with to your doctor appointments or getting some easy to read literature.  It sounds like you have already tried that.  In some ways- I feel your pain.  My husband was in Iraq when I was diagnosed and had no idea how horrible I was really doing, now that he's home I've been well with medications, but just recently have started to have a small bit of a flare and he is not being as understanding as I would like.  Keep strong and turn to a support group in your area if you can find one, or just find someone to talk to if your family is not willing to be those people.  If you feel the need to email someone who will listen, I can give you my email. 

Best of luck to you!