Explaining to people around me that I'm not going crazy

[Digitalhydra]

Hello good people.

I am having difficulty explaining my symptoms to people, partly because none of the standard medical sites have any useful information and only list about 5 symptoms or so, nothing close to what I am experiencing and have read about here on this site. Besides these sites downplay the seriousness of this illness in my opinion. I have the feeling that people think I'm exaggerating and being a drama queen about this. The main problem is that I live with my mom at the moment, and she has no understanding of the pain and fatigue I'm experiencing, I have a sneaking suspicion she thinks I'm making things up. This is making things a bit strained here, which is not something I have the mental or physical energy to deal with, and it's really bringing me down.

Has anyone else experienced anything like this?

[Erica P-G]

Hello...

Yes I and many others here know exactly where you are coming from Read up on the link below....and then share it.

http://www.microscopiccolitisfoundation ... anges.html

If that doesn't prove anything to anyone you visit with you are welcome to share my story from here http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173 it is rather long...but I started out not knowing anything or understanding what this MC or LC was all about but I do know and it is not fake and it takes time to heal it.

I wish you understanding from your family soon,
Warmly
Erica

[TovaMorna]

Bless your heart. I think most people do not understand how debilitating MC is. And it doesn't help that most online resources contain sketchy or just incorrect information. As destructive as this disease is, I think it gets no respect compared to Crohns and UC. I live with my 84-year-old mother...she knows I am sick, but I think it is just difficult for people to realize how sick.

Praying for you and for your mother to understand better. She could be such a source of comfort and support for you!

Big hugs and love,
TovaMorna

[brandy]

Yes, to answer your question.

We have inflammatory bowel disease. IBD's are not talked about because of the "ick" factor.

I also had almost all of the symptoms that you mentioned in your earlier thread. As reference I was age 50 at diagnosis walking 15 miles per week. After diagnosis I could not walk around the grocery. I had to sit on the senior citizen bench at the front as I was too weak.

Ultimately I had to concentrate on taking care of me and rest etc and ignore what others thought. I ended up losing some friends over this as I was too weak to do things with them.

[crervin]

Yes I have experienced this too. My mom use to be that way too. She has came a long way. Now she tries to help me all she can. It will take time. I'm 42 with 3 kids. She use to tell me to just "grin and bear it". Really?? I couldn't function just being a stay at home mom.

My sister-in-law still thinks I'm overboard with my sickness. She had a rash for 2 months and said that my 8 years of diarrhea wasn't as bad as that rash. I explained to her that was 2 months, my MC is lifelong. I have given up with her and never talk about it. On a brighter side, she always has me a baked potato and coconut oil ready when we go there.

I wish you luck, make her read Tex's book. Hopefully that will open her eyes! You take care!

[Gabes-Apg]

in line with Martha's reply above - I learnt it is not worth wasting energy on.

put your energy into yourself, you do not owe anyone else any type of explaination as you embrace the changes to get well.
over time, the people that 'get it' will be there and support you, the eating plan changes etc that you do
the people that dont get it, are not worthy of your precious energy.

MC coming into my life showed me who my real friends were...

[Lilja]

Hello good people.

I am having difficulty explaining my symptoms to people, partly because none of the standard medical sites have any useful information and only list about 5 symptoms or so, nothing close to what I am experiencing and have read about here on this site. Besides these sites downplay the seriousness of this illness in my opinion. I have the feeling that people think I'm exaggerating and being a drama queen about this. The main problem is that I live with my mom at the moment, and she has no understanding of the pain and fatigue I'm experiencing, I have a sneaking suspicion she thinks I'm making things up. This is making things a bit strained here, which is not something I have the mental or physical energy to deal with, and it's really bringing me down.

Has anyone else experienced anything like this?

Digitalhydra,

I agree with Gabes. Put all your energy and interest in getting better. Read here on the board, and eat the right stuff, concentrate on your own health. I saw a program on TV about what country eats the most nutrient rich food, and Iceland came on top. Lots of fermented food, good raw materials directly from the animals, with lots of fish and lamb. So, you are in a good place as to find good natural food. And also, you can take baths in the natural hot springs on Iceland, which gives you precious access to minerals!

As for me, I don't talk about my disease to people or my family, nor do I talk about what I can eat and cannot. I don't try to convince them that I'm doing the right thing. My conclusion when I was really struggling was that "if they don't see with their own eyes that I'm not my good old self and that I'm sick... they are not that interested in me".

Ask old people what they ate in former days, and you will discover that our modern food today, is really "anti nourishment".

I wish you the best of luck and that you will get better soon.

Best wishes from
Lilja

[Gabes-Apg]

placing comment so Anna can read thread (brings it to towards top of main message board)