I have basically been written off by my folks as a moan and hypochondriac , till last few weeks when ive spoken or at least tried to about sjogrens.ive spoken to my mother about it and fist time i did i stupidly broke down crying on phone as it was recent news and id read the worst case scenarios and gotten scared . Now 3 weeks later she is ahnging onto that , she brings things up i done when i was 7 so thats no real shock, i love her but she sufferes depression and wont get help, her doc thinks she has been taking anto depressants for 3 years but she doesnt, she just moralises about ppl getting on with stuff and thats that.
Now her and my step dad showed up yesrterday and when i tried to speak i was exaggerating it all, and my diabetic step dad was going on and on about ppl having cancer and him not being well getting out and about and im just a feel sorry for myself moaner that needs to just get back to work and get over myself, i guess in a way its my fault coz ive not told them half my symptoms , i ddint want to be scaring ppl . So i had in my own defence coz it got to shouting at me stage and i exploded and got myself right stressed out, and when it calmed slightly i tried to explain what it was, she thinks i am accepting it way too well, am not showing it in my blood, so i dont have it and its all down to smoking, so i ran down every symptom i had, walking into things, co ordination probs at times, cold feet and hands, numbness pin and nedle sin arms and legs, vomiting every morning almost at 6 30, by 9 30 at night im sore and wacked and can do nothing but sleep , all day im tired out, its like a bad handover daily i said to them , but no its mental attitude causing my tiredness im needing a good shake , and my step dad went right quiet and said sounds alot like my diabetes, sure it aint that ?? i said no nor is it my thyroid either ive read my levels and theyre fine . he bagan to relate to me, and realised im at stage he is at with many symptoms thats taken 13 years to build with him, now he had a years depression after DX and i feel i am coping well and am not up for the emotional blackmail right now.
other hand i can see maybe theyre in grief and right now theyre going between anger and barginning, it could wel be that, but theyve alwys been the types to put me down then say why aint we closer ??
has anyone had this in their family and how did it pan out, any advice as to how to explain it, or should i just leave it alone and not talk about it with them at all ?? im not looking for their sympathy , just some acceptance that i am not being lazy
T x
Hi Mc Haggis
Sounds you're having a real tough time of things at the mo - and when you need your family most they let you down. Sometimes people don't listen because they don't want to hear what you're saying - if you understand that - bit like ostrich in the sand and it will all go away. Unfortunately for us it doesn't.
I've faced similar and found that giving as much info as possible on the illness really helps. Print stuff of the web, this site, and let them read it - kind of makes it seem real then.
Hope things improve for you soon.
Wen x
Hi Mc Haggis!
I'm so sorry that you are going through this with your family right now. I do understand the feelings you are talking about...Ive been through it with some people!
I agree that some people just don't know how to deal with this type of information from someone they love.....as Wen said...if you don't know about it or don't hear it...then it doesn't exist! Thats how some people deal with things. It doesn't mean they don't care...its just scary for them as well...especially for parents and close relations. They also have to go through the stages of acceptance like you mentioned.
I agree that information is the best way to deal with this....there are some good books on our book reviews page as well as wonderful information on this very Board. In the end...if they don't want to hear it..they wont until they are ready....so please find other supports that you need...like other family members or friends and of course by coming here!
Hang in there......sending lots of gentle hugs to you....(http://www.freesmileys.org/smileys/smiley-hug008.gif) (http://www.freesmileys.org)
wen lynnemarie
thnakyou for your replies, you both make alot of sense :)
thankyou for the hug smilley made me giggle :)
yup your right i dont myself think its badness, but somehow i have to stop the stress and on all fronts except them i more or less have. I shall try gving them a few weeks, an then giving them some info and the spoon theory , if they dont read it so be it, just like not to be called names , they are my only family im an only child , and we aint spoken to my violent dad`s side for many years . I have great friends and i have this forum so i aint dropping off an edges im not the lemming type :) , just impartial advice is greatly appreciated so ty both :)
T x
Hey Mc
I agree with wen, You need to copy off some concise infomation that they may understand. And just give it to them.
Mc, I only talk to people who I know will understand and receive with compassion and understanding about SJS and its affects. My Sister, my husband and close enough friends that I know care. Every one else just does not matter.
I have never told my folks (step mother and father) as they have a history of not understanding and infact making tacky remarks that hurt. A good counselor advised me of distancing myself from what is known clinically, as toxic people in our lives. Many times our own parents are the most toxic to our mental health.
My real mother who left when I was 7 years of age and has extremely advanced RA. She was DX with RA at age 29. In recent years my sister and I have forged a renewed relationship with her. Ironically enough, My phone conversations with her are very comforting, as she has deep understanding for auto immune disorders. Also it feels her emotionally to be a comfort for me as I share AI decease with her.
My advise for you- is to find the people in your life that affirm you, encourage you and have compassion and understanding for you, that you can communicate with in regard to your health issues.
Find a safe distance from those that cause stress and are emotionally draining. Just give them a hug along the information in writing.
In your mind stamp a toxic label on them. :)
KNOW THIS: Your sjoggie buddies will listen, affirm, encourage, and have compasion. We will laugh in the good times and cry with you in the bad. It's the Sjoggy pledge. Were in this together. ;D ;D ;D
love and hugs kimbo
Mc Haggis,
But you don't look sick, so it must be all in your head! That's one of my favorite saying I hear from people and now I have cancer and I still don't look sick, but the C work has magical powers and everyone is afraid of it. Unless you have a puss drain or your arm is falling off, you're not sick. One can only imagine what it is like for people with mental problems, they look fine, but need help.
It sounds like you made progress with your step dad, that's a good start, but the trouble with dealing with family is everyone gets too emotional and parents say thing to their kids that they wouldn't say to people they work with or a total stranger.
I guess there is an advantage to being raised by wolves or monkeys.
With the support of members of this group, I was able to disassociate myself from my brother and his toxic ex-wife. If the people whom you love are not able to accept you and your diagnosis, why would want them in your life? You're truly fighting a losing battle. They cannot accept what they cannot feel or experience themselves. In the meantime, you are a stress case because they don't understand. I am a better person for finally standing up for myself.
Mc Haggis,
I have to agree with what the others have said, is it worth the stress to be around people you know are going to emotionally hurt you and be little because they cannot see you do not feel well. They are not worth it, surround your self with people you know love you and can accept the fact you are ill. Just because someone is family does not mean we have to tolerate their rude and disrespectful behavior.
Collie
Hi McHaggis,
I hear what you're saying - and its not fair. They should listen to you.
You say your Mum has been depressed for years. Has SHE had her thyroid tested? The trouble with ongoing depression is the depressed person finds it very difficult to see outside their own black hole. 'Getting on with it' doesn't work - and she must actually know that.
You may have a better chance of getting through to your step father. Diabetes is also autoimmune and diabetics don't look sick until they throw a hypo. Maybe discussing it that way would be a way in.
If I couldn't get said what I wanted to, without getting emotional - or being interrupted - I used to write letters to people. I've written to my husband and I've written to a couple of my children and I wrote to my Mum when she was alive. I found that on paper I could choose my words carefully, no one could interrupt and I could say everything I needed to and ask them to think about it. For me it worked.
Whether that would sway your Mum or not, I don't know. Depression can be all encompassing. Part of her probably wants you to look after her and like someone else said - she's being an ostrich. She doesn't want to know you're sick.
They are giving you a raw deal. Somehow you have to find a way of keeping cool about it because you know stress will make it worse. Good luck - and we're always here to blow off steam at.
Take care - Scottie :)
Hi T
Yes, I've lost several family members (including my son and two grandchildren) since I have been unwell. Toxic d-i-l is to blame, as 'I wasn't there when they needed me'. Didn't matter that I was very unwell and had also had major surgery.
My mum is another who doesn't/doesn't want to understand. She asks me about my symptoms and hospital appoitments and then belittles me to other family members.
This is not a pity party - just telling how it is, so you know you're not alone. We Sjpggies have a lot to put up with :-\
Kathyx
Hi T
I'm so sorry you're going through this extra stress. You've done so well over the past few weeks of rollercoaster emotions, and you've done the right thing coming here and telling us about what happened with your mum and stepdad.
Your story resonated with us, as you can see, and there's so much wisdom here to help you. There's also a lot of honesty because we're all aware that this is one of the most difficult aspects of long term illness that we all face. Just when we need our families to give us unconditional support, it seems that old 'stuff' emerges.
I agree with Kimbo that it's only worth talking to the people who can listen with compassion. This sounds easy, but it isn't. What it means is that you will have to accept that there are some people in your life who will always need you to be the person they expect - giving, enthusiastic, warm, energetic. They just don't know how to relate to you when you have needs or pain or any difficulties. I thought it was interesting that your stepdad seemed to 'get it' when he could relate what's happening to you to his own experience with diabetes.
You could get an information pack on SjS ready for other friends and family, but it sounds as though your mum and stepdad aren't in quite the right place just now. They're also in shock and grieving, worried about you and feeling powerless.
So much of SjS is about balancing acceptance and resilience - but I know you know that! You also need to be self protective, as the others have been saying. And take Kimbo's Sjoggie 'pledge'. We're definitely in this together.
ps Kimbo wrote a really amazing post about toxic relatives a few months ago with such wisdom about how to accept and also to let go. It's worth looking up, or maybe she could repeat some of it now?
Thanks Chana, I can't remember where that was or what thread, my sjoggy brain gives me very limited recall.
I chuckled inside when Scottie mentioned writting letters as a way to communicate, excellent advise. My step mother sent the letter I wrote back, to me UNOPENED, inside a larger envelope. It was meant for my father and her both. Thats what sent me to therapy. The counselor advised definitely to let go of those toxic relationships.
It seems no matter how old or mature we get, the mother /father issues of ill relationships can still hurt and affect us.
I am envious of my own daughters for their great relationship with my husband and I ,as their parents. It is important to not let history repeat itself.
We should invest our heart in the right places.
kimbo
Hi-
I, too, am so very sorry you're going through this. Unfortunately, it seems that there are just some people who can't handle that we're sick.
For me, that's mostly my Mom, my Dad until my Mom got sick and he developed lung cancer and finally realized that being ill wasn't all in my head.
When I first got married, I got sick. I was jittery and could eat just about everything I wanted but still lost 4lbs in about 4 months. Yes, I was hyperthyroid. But at the time, in northeast Pennsylvania, thyroid problems weren't common, and this dragged on for months. My Mom, an alcoholic and also a nurse, convinced my Dad, sisters and brother and did her best to convince my husband that it was all in my head. She worked at one of our bigger hospitals at the time, and even went so far as to get a doctor I'd never seen to draw up commitment papers for the psych ward at her hospital. Fortunately, I was married and it was my husband who would have to sign the papers, and as it dragged on with no answer with all sorts of tests, she got close to convincing him
Fortunately, my husband and I recognized the need to get away from both sets of in-laws and he was able to get a transfer to Oklahoma. We actually ended up in the small town my Moms family lived in and I met her sister right away. Well, wouldn't you know, there was a family history of thyroid problems, including my Mom. It hit in the early 20's and then tended to taper off later in life. One little blood test and we had our answer. Within 6 months I was doing well and pregnant with my first son.
My Mom now has alcohol induced dementia, but we did make a sort of peace before she got too far into the disease. But to this day, one of my sisters will not talk to me about my back injury or my Sjs. The two others will talk for a minute or two then change the subject. My brother has developed diabetes and since my Dad's funeral, we've became quite close.
Sorry to drag on my story, but, like the others, I had to learn to avoid the toxic relationship I had with my mother. I just happened to be the child in the family that was stuck in the alcoholics mind that couldn't do much right. But I've learned over the years that this was her problem, not a problem with me. There were times over the years when I had to avoid talking to her, but a very good therapist (who I still see from time to time) helped me to learn not to give her the ability to hurt me. When I took away my fighting and tears, she finally didn't get the reaction she wanted, so she stopped, I guess the word is picking on me, tho that doesn't quite cover the things she did.
It's not an easy lesson to learn, but sometimes we have to step back from the ones we love the most. Your at a point, I think, where you can't afford to let you Mom and Step Dad churn up the emotional roller coaster you're on any more than it already is. I'm not suggesting you just stop seeing them, tho it did come to that for a while with me and my mom, but since they aren't receiving the message of all your going through, when you do see them, give it to them in smaller doses. Give them the URL of this site and maybe another informative site and let them read and adjust at their own pace. And in the meantime, surround yourself with friends and other family members, if there are some, who support and strengthen you.
I'm sorry my story is so long-I tend to run on, but I hope it helps in some small way. Take good care of yourself and remember, we're all here for you whenever you need us, don't ever be afraid to come looking for comfort.
Tracy
scottie just struck a chord when you said she likely wanted you to look after her, as an only child thats so fitting , she was never overly maternal but ive to be all family family to her.
kathy certainly not a pity party, so sorry about your son and mum , isnt it a right 2 and 8 , help them ?? lololol didnt you do that all your life raising them ? you know i used to help my mother clean her house, i take her for lunch once a month all expenses paid, give her an extra bit when she goes on holiday , and she can be the most spiteful person at times, i remeber since she has bone overgrowth in her shoulders her crying at 54 saying i feel diasbled at a young age, yet im 37 and im a liar, ppl amaze me , how they still do i dont know, i know your too young but i could adopt you :D
kimbo reallly appreciate the time youve taken to post all this, i did what you and scottie did years ago to my mentally abusive father, once my mum and him split ( womanising wife beater at times) he tried to upset me to get back at her, i wrote him a letter saying how much i loved him but i wasnt being treated like a punch bag anymore, and he needed to realise that that was when i was 16 he never spoke to me again, took me a while to see it was for the best , but in the end you do, sorry youve been there too, so many ppl affected by toxic ppl :(, i agrre i never let thqat family cancer spread to my kids, my sons are very close to me, i am getting hugged to death these days, and my 13 year old tells me about his hopes anf fears, he has his own religion ( as wiccans dont believe were right just right for us ) he is christian and i used to take him to church sunday school coz he wanted to go , he is science minded and im all esoteric , he is strong willed and i allow him to be who he is , according to his friends im the "cool mum " they have my house wrecked with experiments and crafts and arts , wasnt allowed anything messy in my mothers house, a fact she denies , and theyre happy kids, always a knee out the trousers , i went into the oldests room last weeek and he had stiped his bike to see how it all worked, oil on an old sheet parts everywhere, i just shook my head, and put the kettle on , maybe why he is now head of his year and vice school captain, he was never stiffled, wiccans beleive we al have a purpose and we should raise our kids to their life purpose not ours, as i tell my sons life will never be about making me proud, make yourself proud , your best is all you can ever do
chana you truly have a way of putting things :) benefit of the doubt i shall give them time, and then info , if that doesnt work its aletter, if that dont work in stopping their stress, then i shall have to stop it myself, but i shall give them a chance :)
tracy am never going to be the person who think a post is too long, its a sl ong as it needs to be :) thankyou so much for being so open with me about your problems with family , takes alot to share all that to let someone know theyre not alone , and the time taken too :) " couldnt do much right" i so relate to that no matter what i do im wrong, my first husband left me in 18 thousand debt , pregnant, homeless and within 2 days i was up sorting accomadation, getting to docs, within 2 weeks i had a flat, didnt have a sick day at work, and made ?50 last me 3 weeks till i got paid again , within a year we were in our own home and though nothing fancy was truly a good home of love and caring , my son had seperation anxiety as his dad wanted no contact with him, i never left his side and worked nights when i put him to be di worked, and when i came home i changed out my uniform into pyjamas so he didnt know id ever been away from him, my mothers marrriage broke down when i was 13 she was on alot of valium and took a break down ,i used to comb her hair and get her to work , i did my dads dinner 3 nights a week there, and ironed my own clothes ,she then got herself a boyfriend and left me home alone most weekends , wasnt till my step dad came long we was all holy holy again , if i show any emotion im weak, yet both of them have had times where they were lesss than as strong , and i dont judge . thing my friends say they like most about me is the fact they could tell me anything and i never judge, i smile and say ive been judged all my life , i hate it why would i do that to someone else ? we dont know how we would play the cards some ppl have been given , until we were holding them.
thankyou you all so much for the advice and sharing your personal issues, seems we are truly all in this together, so i pledge my love to my sjoggies family and say truly i am apart from my mother doing great within myself feel positve and calm, booked up and went away from a night on saturday, ben looking at houses as were looking to move home, things have been so much easier being understood and comming from somone who truly understand ,i ll say it again is invaluable to me , feel truly humbled to have found a family here, hope to meet kathy when im down there next, i have you lot, a great partner, 2 great sons , some salt of the earth friends, im blessed :)
T x
Hi T (not sure whether that's what you go by or Wednesday, sorry)<
You have been through SO much in your life. I hope you give yourself a pat on the back every day for how you've not only survived, but thrived and have been such a good Mom.
Separation anxiety in a child is also so very hard. Sounds like you've been a rock for your son. We went through that with my oldest, now 23, when he was 8. I'd had my second back surgery in a year and he was convinced that if he let me out of his site, I would die. He finally got so bad that he "wanted to go to heaven where there were no problems" and tried to jump out of a moving care, so we had to have him hospitalized. When he came home, we were sure that one of us was with him every minute he wasn't in school and he came through it just fine. In fact, that's how he found his passion for art and his artistic talent. Since he liked to draw as a child, his therapist suggested that when he was upset, he draw what he was feeling, or what was in him mind. Before long, he no longer needed a therapist and has become an artist and is working toward being a college professor. It's so wonderful that you're able to help your son without the need for a therapist. If he does need help at some time, it doesn't mean you've failed in any way (that's what my husband and I thought at the time, but the therapist worked with us at well!).
Take good care of yourself, Wednesday. I can tell by the "sound" of your posts that you're feeling better. Don't let anyone take that away from you.
All my best, Tracy
Well T, one thing is for sure after reading all these posts. We are a tough lot us Sjoggies. Bad enough that we get all these weird symptoms to bear, we get all this grief from family & friends , and even some Doctors too. Yes, we cry often, and we all have our crap days & nights, yet still we battle on, working , keeping house, seeing to kids and grand children etc' planning this and that, when we don't even feel like doing anything more than laying around!!
It takes guts and we have ! Best of luck, Wednesday.
Bless! Dolly
tracy one thing no one will ever get is my inner light, the thoughts that amuse my soul and the heart that feels , somethings no oen can take, was always a fighter, see no point in lying down to it all now thankyou again for your sharing x
Dolly
you are so right !! amaze you what ppl here have been through and are facing daily with enough energy left to show someone else compassion , its truly heart warming and makes me feel very lucky to have found here , to have such great ppl to go through this journey together with .
Its a miracle with all that disbelief we face, living with symptoms and every day trials that we , dont lose the plot completely , but i think with all this come ssome kind of inner strenght that pushes us on , ppl here have had a harder time than anyone deserves , but seems to me its never made them bitter, just wiser , and its that wisdom which im most proud to be a part of, thankyou
T x