Test results -Family/Friends Relations

[LookingforAnswers15]

Hi, I have a lot on my mind right now. I started writing this post yesterday but never finished it and today I got my test results so I am just miserable.

As I am trying to get better, I often feel I have only a couple of people to turn to for support but at the same time, I do not want to bother them with all my problems. Some family members know about Celiac but I do not share it with many people. It is because of the culture and I think I would be talked about and lectured on how I should have taken better care of myself. I really do not need those lectures now. Anyhow, with that being said, I rely on a small group of people for support. This summer I had a lot of scary neurological symptoms. I know I panicked when I was experiencing these symptoms and even my posts on here show that. Like some celiacs, I suspected MS due to neurological issues and since I mentioned worrying about this and it turned out that I did not have it (thank God), some relatives seem to dismiss whenever I say that I do not feel well. Yesterday I was asked (not in a nice voice): "when are you going to feel better?" It really hurt me because it is not my choice that I do not feel well and it is not like I have a control over this. This person further went on to say that she did not believe me and that all this was in my head because of reading things online and then started talking about how I have changed so much. I get a feeling that some of them think that I just became lazy and judge me for that. I have been told to "shake it off", that celiac is not that bad, that I am not the only one with it. I was also told that they do not believe I have anything else apart from celiac (without even asking about my symptoms or tests). It is almost if I have to 'justify' my illness and actions to them and I do not think I should have to do to.

To make things worse, I was recently so disappointed with my oldest friend from home. I have always considered her one of the closest ones but I guess it was one-sided. Since I was at home when I experienced some of the worst symptoms, she knew I was not feeling well and weeks would go by without her even texting to say hi or ask how I was doing. We never had any arguments. This really hurt me. 

Today, I finally got all my test results back. My worst fears seem to be coming true. Based on the test results, the doctor is suspecting Lupus (sending me for another test) as well as Hughes syndrome. My whole body feels weak. Even putting my hair in a ponytail seems so hard. I have been trying to figure it out for so long and I know I should be 'happy' to at least know what is going on so that I try to figure out treatment for it, but I am just tired of feeling this way.  Is it possible to ever feel 'normal' after being diagnosed with 2 or 3 AIs? When I was hospitalized a year ago and diagnosed with celiac, my doctor said "you are lucky it is not lupus" and now I guess I ran out of luck...

 

[mommida]

I end up posting this a lot.  You really find out who your friends are when Auto immune issues like Celiac show up.

The nasty details of physical symptoms Celiacs deal with make it hard to discuss face to face.  We find out family and people you thought were your friends can't be bothered by going to the restaurant with a gluten free menu.

It is one of the reasons why this site has been so helpful to so many.  Instant on-line support in your own home when you are too sick to go anywhere.

As far as being diagnosed with Lupus, you are going to charge of your health in general.  Eat healthy, exercise (even if it is only meditation or listening to music tapping your feet) 

[LookingforAnswers15]

Thanks Mommida, you are so right. I do not even share everything with them because I do not want to burden them. I always make sure that we talk about them and their lives so that our conversation is not just about me. So I really do not think that they can say that I overwhelm them with my problems. I understand they have their lives and now children but I have always been there for them, helped when needed and made sure to acknowledge and celebrate their happy events even when I was thousands of miles away. Last December, I met up with a different friend and her boyfriend that I had not seen in a couple of months. This was around the same time when all these other symptoms already started showing up and I spent a lot of times at the hospital. So, when I met for lunch with them, when she asked me what was going on with me I just said that I had to see a doctor a lot (without elaborating much). Later, she literally said "So, the only thing going on in your life are health problems?" Since English is not her first language either, I thought it came out harsher than she meant so I gave her the benefit of the doubt. I said: Excuse me? and she repeated it. The whole lunch (since she said she was hungry and refused to go to a gluten-free restaurant since it was a vegetarian place and she likes meat, so we went to some place she chose) was weird. When I had to order my food, yet in another language (this time in her native language), I needed to make sure they understood what gluten-free and celiac meant, it was obvious that she was annoyed and spent a lot of time on her phone. Her boyfriend, who was not even my friend so I did not know him well, noticed how awkward it got so he was trying to be kind to me. He asked the waitress if they checked if my food was gluten-free and came up with things to talk about since she was just on her phone. We never contacted each other after that.

I have to admit that I truly feel alone and I agree with you, this site is where I can talk to people who understand me. At this point, I do not understand human nature. There is nothing I would not do to help my family and friends but I guess this cannot be said for everybody. The least thing one can do is to send a text msg. 

As for Lupus, I think I will need to figure out my treatment options. I think they will actually test me next month at the same time when they do retest for Hughes S. If possible at all, I would prefer using natural remedies but I do not think that will be enough. As with everything, there are risks and side effects but considering that I have really tried to take care of myself and I am not getting better, I am worried that my way is not enough. I eat so healthy now and I have always loved exercising but physically I cannot do it now. I used to run almost every day prior to my diagnosis and when I had to stop, I happily walked everywhere instead of using public transportation. However, in the last few days even going to a doctor 10 minutes away from my home seems so far. you are also right regarding meditation. I need to start yoga, meditation or something.

Thanks again Mommida for hearing me out and responding. 

 

 

[ERH]

Some people get mesmerized with their illness and talk about it endlessly ... but you don't sound like one of those people!  It is important to give your family and friends an overview of what being Celiac does to your body and future health so that they will understand why you have to closely regulate your diet.  After that, when food choices become an issue, just simply saying, "That will make me very sick" should be enough explanation.  

If so-called friends cannot be bothered with acknowledging your illness, then they never were friends.  When your need for a special diet is too bothersome for some people, just avoid them ... don't waste time on people who don't care about you.  Some people who say, "It's not that bad, etc." are  ignorant or may be trying to be encouraging.  Just repeat, "I will get very sick if I eat that"  with a smile.  Again, your true friends will emerge and be surprisingly helpful and considerate.  

Kick the mean/uncaring people to the curb.

[MsMarginalized]

DANG-NABBIT! I HATE BULLIES AND MEANIES!

Into that category I put EVERYONE who seems to think it is THEIR job to judge me or make me have to justify myself. Be it the Celiac, Aspergers (a "defunct" form of Autism that I was diagnosed with mid-life) or this new problem [Ankylosing Spondylitis] my sisters and brothers have ALL been less than loving to me.

My whole freaking family bullied me for a LOOOOONG time. One brother branded me a HYPOCHONDRIAC. Despite the fact that I'd worked my entire freakin' life until crap started happening!

That's actually how I came to the name I use here & in a few other places "MsMarginalized". At first I felt sorry for myself. Then, when I got the final diagnosis' that did validate all the crazy crap I have been going through, I cut them all out of my life. Now I feel as if I've earned the title through a prize-fight

Life is just too short to put up with bulls$#&. I have enough of it with my medical problems, I don't need it from the people in my life. So I have chosen to surround myself with supportive, loving people. I'll let the judgement come once I die.