Can I keep this secret?

[Tryfan]

I feel like I'm living a secret life at the moment as I'm struggling with who to tell about all this.  I don't think people will be interested and I look all right so it is difficult to, as Jaygee put get them to 'see how I feel'.  The other side of this is that I don't really want to talk about it to others because I don't want to moan.  I haven't told my children yet because one has Asperger syndrome (autism) and doesn't like disease and he's taking important exams at the moment, the middle one is a sensitive soul who would be really worried about me and the youngest seems too young to be given this sort of news.  Because I haven't told them, I don't feel able to tell anyone except my husband who has done a grand job of listening so far.  This site certainly helps but I am beginning to feel very isolated from everyone....I don't seem able to get involved because I don't know how I'm going to feel and I'm tired of hiding my fatigue and pain, in a way.  I know I should tell the children and get on with it but I want them to think of their mum as someone who does things not someone who suffers.  I do think they have adapted already in a way as they have accepted that Mum needs to sit down sometimes.  Do I really need to tell them or anyone, I wonder?  Is there anyone out there who has not told anyone and coped?

Thanks for your time.

[dbab]

Tryfan,

Your post really breaks my heart.  I can feel the pain in your writing and it saddens me.  I know you want to appear very strong to your children and that is normal.  The truth is there is no really right time to tell people.  It really depends on the person and how they can handle it at this time.  For me, my mother and grandmother were the last people I told.  My aunt died of Lupus complications (I didn't even know she had Lupus until I was going through diagnosis - family kept it a secret, I knew she died of lung complications though) so telling my grandmother that her granddaughter has the same/similar disease that her daughter died of was very hard and it took me awhile.

I seem to be rambling but the point is I know how you feel.  As far as the support and feeling alone... yes, yes, yes!  My family knows but they don't view me as someone with limitations which actually would be nice sometimes.  My husband expects me to keep up with everything like I did 10 years ago and I think he's in denial a lot about my illness.  Doesn't like to hear that I'm in pain, etc.  So my outlet is here and a few good people that I have met online.  It's sad that my biggest support is people I never met but thats what I have been dealt with so I consider what I do have a blessing.

Feel free to come here and get it all out whenever you need to.  It really does help, trust me... I'm a pro

[Epson]

Tryfan,

This sounds pretty normal to me if you have Sjogren's and I can identify with your feeling of isolation.  I am fortunate to have a very supporting wife, but I don't think she can fully understand what I am going through, but can anyone know what's going on in another persons life.

It seems as if you need to tell your kids what's going on so they can understand why mom is changing her activity level and maybe get a little help keeping up the house.  I think honesty is always the best policy and kids are a lot smarter then  we give them credit for.

I think Sjogren's makes you feel like a prisoner in your own body, can't go outside because of the sun, never know when fatigue will hit you so hard that you have to lay down, never know how sore your joints will be from day to day and now I can't drive, boy do I feel trapped.

[Scottietottie]

Hi Tryfan 

I brought my kids up feeling like crap with with no name as to what was wrong so my kids probably came to the conclusion that I was pretty darn lazy. They are all doing fine now despite this. They're all grown and flown now. Kids accept you're their mother however you do it. The upbringing they have is what is the 'norm' as far as they're concerned.

Why don't you tell your son with Asperger syndrome, that you've discovered you have a Syndrome too? It's called sjogren's Syndrome. His syndrome makes him one way - your syndrome makes you tired and sore - sometimes more so than others. He probably thinks of disease as something he might catch - but you can't catch a syndrome.

Take care - Scottie 

[missyb]

Tryfan,
I have a boy with Aspberger's too  . He is only 10 though. My girl in the middle is also very sensative. I don't think you should try to hide it. I don't think you should  make a big deal about it either though. After I finally got a diagnosis I found out that my kids all along knew something was wrong with me, though I thought I was hiding it. What a relief it was for them to know I was not going to DIE as they had secretly worried about. Kids always know when things are up, but they don't talk or ask about it, they internalize it and worry worry worry..
Be positive and upbeat, tell them that you have an illness that is NOT life threatening,  Tell them there are medications and dietary changes you can make to help you feel better and manage the diesease. Tell them how it will make you feel from time to time, so they know what to expect. That is all they need or want to know, mom will be OK, she is not going to die, and if she is lying down for a bit, we shouldn't disturb her. 

[Billydude]

I think that your family and friends really end up being hurt in the end that you didn't trust them enough with this information.   Present it as a matter-of-fact and don't make a big deal of it.   If you don't then they won't.   Besides,  this is about you and not about how everyone else will react.  Time to concentrate on YOU!!!!

[wednesday mc haggis]

tryfan

  I was so worried aboutt elling my kids, i posted about it here too.

   all i can say when i told them was WOW!!  They were fine, took it in their stride and i got alot of hugs .

  Sure i was positive about it, and told them how it made me feel right now, and didnt suggest progression.

I went on a special diet to help and it did, and i explained to them i was fighting it, and theyve encouraged me to do so, they likley understand better than the adults in the family whose attitude is it isnt that bad, my kids encourage me to fight it , and i do.

   Sure id not say to your lad who has exams right now, id sit them down once exams were over, and read the spoon theory to them, thats what i did, on days im washed out, we now joke mums ran out of spoons, i think secrets in families do the most harm.

Good luck with that and thoughts with you

T x

[jaygee]

Hi Tryfan

How are you doing today?

Like you, I never used to mention stuff.  Just got embarassed when me eyes teared (if it was windy, etc) in front of friends. 

Lately (since I found this forum - thanks everybody) I have been telling my husband when something hurts.  I just say to him "ok I need to just complain for a moment".  I say what's troubling me and then that's it.  I don't know if he really understands, although he tries to, but it feels better to say it out aloud and to know, after reading things on here, that I am not imaging it and not being lazy, etc.

I do agree that sometimes you just need to find the right time to say what you need to.  Hugs.  xx