How do you handle family and friends?

Hi Everyone

Reading this artcile prompted me to ask how you handle dealing with family and friends?

http://pinsandprocrastination.com/15-things-not-to-say-to-someone-with-a-chronic-illness-or-invisible-illness/

Kind regards,

Dkel9307

Brilliant dkel0307.Thanks for posting that. I love that article - really sums it up doesnt it." Invisible"

Family and friends- well im known to be a great masker.My Drs even tell me off about it. Despite being bedridden with this damn thing I still try to be brave and keep my voice 'happy' .Thing is I look dreadful, sound dreadful and feel dreadful - so who am I really kidding ;)

I try to handle everything with a sense of humour , humility and grace. Doesnt always work though!

God bless

mads

x

Ok. I will try this again. I tried to post here earlier with a probably way too long response when I pushed the wrong button and lost all of my work! I am not the best at typing so it really does take some effort !

I know what you mean when you talk of putting on a brave face and trying to stay positive even when your doctor or loved ones should be able to see how you truly feel. I know they won't ever truly understand but they may a bit more if every once and a while you just let it out. It is good for you as well to not have to hold things in every once and a while.

My mother tells me I look to good when I go to the doctor and she worries he will not understand just what I am going through because of it. I am lucky to have a good and long relationship with my doctor. He has not only seen my many photos but I have also flared so bad in his office before he sent me to the ER!

I rarely get out of the house and when I do it is more often than not that I am going to the doctors. I enjoy clothes and shoes and just looking nice in general. Now a days it takes me a good 3 days to get ready for an outing. Day one ....find what I am going to wear. I never know what will fit me now a days until I try it on. If I have to try more than one thing on it is just too much and that activity of changing causes flaring and I am done for a while.

Day 2...Shower the evening before. Showers always cause flaring and I can't do that right before I have to leave.

Day 3 I get up extra early so I can get ready at a slow pace as to not promote flaring. Then I am off looking like a normal person and feeling good about myself and in an up beat mood!

Some people think if it is so hard why go through the trouble???? well it makes me happy and that is reason enough even if it isn't what might matter to them. It gives me a sense of normalcy. It makes me feel even for a short time like I used to.

I think it is important to do both. I wouldn't want to sit around complaining all of the time nor would I want to constantly hold everything in. I think it is a balance.

I hope everyone is well today.

Take care,

Alina

I must admit I wrote my last post after reading what others have said and before I read the link you posted and all I have to say is when I got to the end and it said the most important thing you can say to someone is ...I believe you. It just about sent me in tears. That was probably one of the hardest parts of this right up there with the pain. I am now surrounded by people and doctors that believe me and are understanding even though they don't truly understand but the first couple of years was awful!

Every thing listed there I have heard way too many times and only ever so rarely have I heard the words from a select few....I believe you.

For those of you still fighting for a diagnosis with your doctors or belief and understanding from your loved ones...I am so sorry. This is one of the most difficult aspects of this condition. Just hang in there. There will be a day where you delight in only having the pain and no longer being told it is all in your head and you must be doing something wrong.

You are not doing anything wrong and this is real no matter how many doctors or family/friends tell you otherwise.

Stay strong,

Alina