Abuse of Chronically ill patients

[MSKshelly]

I just found this forum on Medhelp.  I am an IC support group leader in our region! Sadly I am noticing an increasing about of abuse among our chronically ill patients esp. emotional abuse!  Some of this maybe because IC makes the physical relationship extremely painful to the patient. The patient had increased pain not only during intercourse but it can send them into a flare that last for days afterward as well. The patient still have desires, but afterward when the pain levels increase, the spouse often feels guilty and responds with anger or withdrawal instead of help.
This can be come a viscous cycle many times resulting in the death of intimacy at all!

This along with increase medical costs puts a lot of stress on a marriage, but for one that is not strong to begin with it can push things over the edge!

Where can I tell them to go for REAL help.  The scary thing is that being chronically ill you can't work full time, afford medicine or on some days function well and the spouse knows this. Some have been able to get disability but others are not esp. those who had been stay at home mom's etc.

The symptoms of Interstitial Cystitis also increase with stress.  Family members, kids and even controlling spouses know this know this so simply by beating you down and or refusing to help, they can keep the patient crippled with pain as real as if they were physically hitting them!  For some at times it has gotten physical at times too.

The other crazy thing I see over and over is that the kids join in this process and also begin having abusive behaviors.  I feel that they are angry because the parent is sick and also copying what they see in the spouse but it adds a another bad dimension to the pain of living with a chronic illness.

I have gone on a website listing different kinds of abuse and I am seeing definate patterns that establish these actions as abuse but what can patients do and where should they turn. Where can they turn for help with finances and attorneys etc. as well as the emotional support to do what needs to be done as well as deal with the negative issues in the kids.

Every where says to go for help but where, TRUTHFULLY how do they get real truth and real protection!!  Often the church Pastor's or counselor are afraid to take any real steps or actions!!  Suggesting that if it is not obvious physical abuse that can be proven there is little that can be done.

Calling the police etc.can making things worse later too???  Esp when the kids or outside family members get involved with it, that think they know what is best but have little understanding of Interstitial Cystitis or living with a chronic illness in general.  Threats are often made to the patient that their illness and need for pain medications will be used against them.   What protection is out there for this?

Any direction and help would be greatly appreciated, working with a desperate patient now and do not know what to do or where to send them????

Help and info please!

Thank you!

Shelly

[kathy434]

I left you a response on Krashing_now.  I hope I could be of any help.  Kathy434

[jo929]

I am glad that you found someone to help maybe you can answer the lady that calls herself wolves her post the name of her post is seeking help  luck to you  jo

[MSKshelly]

I actually spoke to someone from The Focus ON the Family Hotline that gave me some
help today along with several leads.  I will let you know what I learn !

Shelly

[margypops]

I am honestly uncertain where you would go for help and my feeling is that you put this on one of the Expert/Doctor forums,take a look at the forum page,on the right for better help, there may be others here with more response,I agree with you that these folks need some help ,  Good Luck