Well-Meaning Friends and Family, Difficult Conversations

[MBombardier]

I am sure this has been discussed before because when I did a search thousands of posts came up. I just didn't want to page through all of them, even if I was sure that my search parameters were good.

Do you have certain points about this disease that you hit when talking to friends and family? Twice in the last couple of weeks I've had friends tell me what I needed to be doing... eat more vegetables and fiber, supplement with enzymes... They are lovely people with the best intentions in the world, but...

Also, how do you convince people you are really sick? I think I am my own worst enemy here. On Thanksgiving I hit a wall, and abandoned all the other women in the kitchen to go sit in the bathroom and just try to recover some energy. So I felt guilty about not doing my share.

Today is our annual Christmas tree hunt/massive snowball fight up in the mountains, and I just couldn't handle it. I sent my two girls with another family, and went back to bed. And I feel guilty about that, and frustrated about missing a fun experience that we have done for years.

Generally, I am a pretty stoic person, but (though I am definitely feeling and doing better), there are days when this disease knocks me to the mat, and I can't seem to convince others that I really don't feel well. Maybe if I started complaining about every little ache and pain??? Just kidding.

Any advice (permission to whine, maybe? ) would be appreciated...

[Joefnh]

Marliss as far as conversations with family, I get a steady stream of sure fire solutions to MC & Crohns, like you Marliss its all well meaning, but grossly misinformed. I have gotten to the point of politely stopping the conversation and stating this is a unique disease and I am working as hard as a I can to understand it, and come to terms with what works best for me.

When it comes to friends, many of my friends want to help but their help is conditional; you do this for me I will do this for you. Because I no longer have the energy to freely give to them, many of these 'friends' have drifted away. I have been called inconsiderate, because I no longer have the energy to drop everything and do whatever is required of me at a moments notice. This does make me sad, but I have come to learn that these were not true friends to begin with. I guess recently MC has been teaching me the value of what friendship truly is.

Not partaking in activities is hard, there is so much that I do not have the energy for these days. Thanks to some advice from Gabes, I have learned to be able to not partake in an activity, or even leave work early without feeling guilty. This understanding comes with the acceptance of who we are with MC, and being honest with ourselves in the restrictions that we now have. Similar to the 5 steps of grieving, these realizations come with the final stage of acceptance.

Despite what doctors call a 'benign course' this disease is anything but benign, it changes all aspects of our lives and requires us to learn how to live each day to level that we can. Accepting these changes in our lives is necessary in dealing with this disease. With MC life will be different and require changes and an acceptance of what our bodies are going through.

Marliss having a place like this to be able to vent is great and might I say necessary; I'm glad you shared this with us today. This has been an area in my life that I have been dealing with lately.

--Joe

[natythingycolbery]

I have been very lucky with my friends and family, if they start to tell me what the think, I politley interrupt them and explain things in my own way. I also believe a couple of my friends lurk around on here from time to time, and that my father was thinking of joining so that he could get some more information to support me.

But like Joe said MC is something that affects us daily in different ways, many people can't understand this.

Wish I could be more help, but feel free to moan away at us all, it is what we are here for :)

[tex]

Marliss,

Yes, as Naty and Joe pointed out, one of the primary purposes of this board is to provide a place to vent our frustrations in whatever way works best. Anything that helps us to feel better is good therapy.

I've been at this so long that I no longer get much "advice" from friends and relatives, but I still get a lot of suggestions to "try this or that", or "surely there's something here you can eat". I just tell them that I've already eaten, and if they keep insisting that I try something, I point out that I've spent more than enough of my life being sick as a dog in the past, and I don't see any reason to do that any more. It may sound selfish, but I'd rather they get upset, than for me to have to spend a day or two sick, because I caved in and ate something that I knew dang well I shouldn't have.

And, I'd rather be considered to be an eccentric grouch, than to be a sick eccentric grouch.

Tex

[MBombardier]

Thank you all. I think I must still be in the fourth stage of grief, and I think I just figured out that I am not giving myself the time to work through this. I have always been "the strong one", and the one who takes up the slack when others can't, and I think I have been expecting myself to work through this, snap out of my funk, and just deal with it, just like I do everything else. I'll have to think on that one awhile.

Joe, I really appreciate what you said, especially about "stating this is a unique disease and I am working as hard as a I can to understand it, and come to terms with what works best for me." Polite but to the point.

Hopefully I, too, will learn to enjoy what I can and say no to things without feeling guilty or like I have to make excuses.

[Gabes-Apg]

when people have asked me about it,
i ask them - have you ever had really bad food poisioning that went for more than 24 hours? and you probably thought you were going to die as it was the most exhausting thing to endure (most times they nod and say yes) i then reply, that is my world if i eat foods that are my triggers...

it generally keeps them quiet........

[mbeezie]

Love it Gabes - that's the perfect response!

I'm gearing up for a trip to see my brother at Christmas. He is very much into family traditions and loves to make the holidays special for people. When I told him all of the traditional stuff I couldn't eat he got a bit cranky (overwhlemed I think) trying to figure out how he will accomodate us. I assured him I will bring all of the special food we need and help with the cooking. That's about all we can do. It's important to remember that we are not responsible for others feelings and they will get past it, but you have to be clear with them.

Mary Beth

[grannyh]

I don't think anyone really understands what we go through with this disease. Even my husband.. who has been extremely supportive throughout.. said at one time.. If I didn't live with you I wouldn't believe the number of trips to the bathroom you do in a day.. he was unemployed at the time... and made the runs to Walmart for my diapers. Even being trapped in the house..and I moved the computer to next to the bathroom.. I still rarely made the dash in time.

Heck if I didn't have CC, I wouldn't have thought anyone could have so much D ... !!!!
grannyh

[tex]

Gabes,

I agree with Mary Beth. Your response is the perfect way to handle the situation.


GrannyH,

I think you're right - most people are sure we exaggerate, because there is no way that they can comprehend that kind of diarrhea, since they have never experienced anything like it, personally.


Tex

[Gabes-Apg]

as we have discuss prevously - we all do such a fabbo job of 'coping' and they cant see the symptoms, they dont see us first up in the morning, they dont feel the joint pain or the heaviness when our bodies are struggling.

I work on the theory that i dont need their acceptance or understanding. If they are not able to get it, they are not able to get it, there is no point wasting my energy trying to get them to understand. I remember when i first got the diagnosis, and was doing research i was thinking 'what the?' how could a condition have that many symptoms and i have never heard of it!

What is important is that the people that do get it, are here, for your good days and bad days. what others think doesnt matter... what matters is how YOU think and how you approach it.

[natythingycolbery]

I remember when i first got the diagnosis, and was doing research i was thinking 'what the?' how could a condition have that many symptoms and i have never heard of it!

See some of my friends did that with my condition, and took wikkipedia at face value so they started to tell me how I should be feeling

[tex]

Yep, Wikipedia contains the same misinformation about MC that's found on most of the major hospital sites. Their references, for example, show conclusions such as:

Lymphocytic colitis is characterised by a benign course with resolution of diarrhoea and normalisation of histology in over 80% of patients within 38 months. Considering the benign course of the disease, the potential benefit of any drug treatment should be carefully weighed against its potential side effects.

One of these days, someone who actually knows something about the disease needs to take the time to do what is necessary to correct and totally rewrite their information on MC.

Tex

[grannyh]

Sure makes CC look like a walk in the park! At about 38 mos I had almost died several times from dehydration! There was NO sign of relief!
grannyh