I get that it is hard for people to understand what we go through on a daily basis. Does anyone have suggestion on how to help them. I had posted "The Spoon Theory" on my FB page. One dear friend read it and thanked me for helping him understand some of what I go through. Then I got a couple messages from family telling me to quit trying to get sympathy and feeling sorry for myself. They feel that I need to pull up my big girl panties and quit letting the lupus control me.
None of my family get it. The only ones who understand have Cystic Fibrosis. They have been a rock to me. I get very upset that there is no understanding from my family. But all of us can stick together and keep each other uplifted
Spoon Theory is my go-to explanation for how to understand what we deal with. Some people feel that since we don't look sick, that we're not really sick. Unless they have had an invisible illness themselves, some people will just never understand what it's like or that we're not sitting around trying to get everyone's sympathy and having pity parties. But, that's why we come here, so we have people who understand exactly what it's like without questions.
Recently, my daughter said "you can't blame everything on your illness" that stung, but I let it go. I have to take care of myself, and not try to force her to understand. So that means sometimes I have to say no to her and stick to it. I don't think we're going to help them understand unless they want it.
The Spoon Theory has been my "go to" for an explanation to those who want to know how I feel. My husband brings me collectible spoons from the different countries he has to travel to for work. My daughter, who has Ehlers-Danlos, suffers much of the same symptoms and fatigue that I do. My husband, my daughter and my mother-in-law (adore her) are the only people that believe me and support me. My dad said I don't want to get well. And my mother has dementia. So, she doesn't even remember who I am, much less that I have lupus. My sister? Well, she just ignores everything bad or uncomfortable.
You are alone! Stay strong!
Isn't it awful that we have to have lupus in the first place and we have to prove to people it is actually for real??? My parents are gone now but they were always so supportive. Makes me miss them all the more each day. My husband totally gets it because he has seen me go through so much it would be hard for him to not understand. My sister through the years has educated herself and has totally come around. Now my brother who I love dearly had a problem trying to understand just how it affected me. Well one day I needed a ride to the doctor's office because my husband had a conference and I wasn't feeling well enough to drive. I invited him in the office for my appointment. He listened to all the meds I was taking and my symptoms and how the doctor spoke to me. I think a light went off in his head and he has been so thoughtful and kind about my disease ever since. He really didn't want to accept his baby sister was really sick.
So take some of those non-believers to your doctor's appointment.
Hang in there and sending you a hug!
I have seen members post about the spoon theory, and I honestly thought "what?" I just googled it and read it. If you haven't read this yet, I recommend it. thanks Artchick for posting this...
artchick said:
The Spoon Theory has been my "go to" for an explanation to those who want to know how I feel. My husband brings me collectible spoons from the different countries he has to travel to for work. My daughter, who has Ehlers-Danlos, suffers much of the same symptoms and fatigue that I do. My husband, my daughter and my mother-in-law (adore her) are the only people that believe me and support me. My dad said I don't want to get well. And my mother has dementia. So, she doesn't even remember who I am, much less that I have lupus. My sister? Well, she just ignores everything bad or uncomfortable.
You are alone! Stay strong!
I think we can all relate to this. I know I can. My family was very insensitive and added insult to injury. I went to the local support group and found they didn't talk about feelings. Just prednisone and lawyers. (1994, South Carolina, long ago).
So I formed my own support group in the church basement after learning there were 2 other women in the church with lupus, and a friend of theirs with lupus (but not a church member, but we didn't care). We talked freely about challenges and what we were trying in order to live better lives. It didn't stop the dumb questions and comments from others. What stopped that was me being choosier about who I spoke to about my illness. I learned it the hard way, after one friend said to me "you're still talking about that?" (um, yeah. and you're still talking about that U2 concert you went to in 1983).
Maybe some humor will get through to them? Here's a short video with a list of annoying things people say to folks like us. At the least I hope it's useful to you- you are not alone.
Top 10 Annoying Things to Say to Someone Who's Been Diagnosed
Thanks for the video. I had to smile. Bet I have had all but maybe 2 of them said to me before. The one I love is "Have you tried home remedy things or changing your diet"? Now I have to say if there is something we can do to help ourselves I am so for that but chronic illness does not just up and leave because you are taking an extra vitamins.
It is good to laugh between the tears of frustration. My mother was so ill and she would still find something to laugh about...I hope I can follow in her footsteps.
Carla Ulbrich said:
I think we can all relate to this. I know I can. My family was very insensitive and added insult to injury. I went to the local support group and found they didn't talk about feelings. Just prednisone and lawyers. (1994, South Carolina, long ago).
So I formed my own support group in the church basement after learning there were 2 other women in the church with lupus, and a friend of theirs with lupus (but not a church member, but we didn't care). We talked freely about challenges and what we were trying in order to live better lives. It didn't stop the dumb questions and comments from others. What stopped that was me being choosier about who I spoke to about my illness. I learned it the hard way, after one friend said to me "you're still talking about that?" (um, yeah. and you're still talking about that U2 concert you went to in 1983).
Maybe some humor will get through to them? Here's a short video with a list of annoying things people say to folks like us. At the least I hope it's useful to you- you are not alone.
Top 10 Annoying Things to Say to Someone Who's Been Diagnosed
Hi, it is hard enough for us to deal with our on self , but , i refuse to keep telling GROWN people (who know what is wrong with ) , how am feeling !!! Not trying to sound selfish , but hay !they know that there are good days and there are bad days . If it has been awhile since the diagnoise, they really know mostly what , when , and how you are feeling - not all the time , but hay! they are not children!!! Sorry to sound hard , but , i don't understand or baby grown people.....Beverly L.
I guess I was hoping if they could understand, that maybe they would be willing to help me when I need it. (driving over an hour to the drs, picking up some groceries) My ex has been trying to find an opening to get back into my life (I think he figures since I have lupus he could control me easier) and some days it seems like it would make my life easier, but financial security wont make up for the emotional toll it would cost.
Yeah! We think that they will come around to thinking like us(which takes time) , it is a lot for some to realize that ,"hay they are not the way they -( us ), use to be!! But just know they try hard to relate , it will happen and set a pace for them and yourself!! And relax , take whatever help they offer, for them to get use to this also…Beverly L.>
keepgoing said:
I guess I was hoping if they could understand, that maybe they would be willing to help me when I need it. (driving over an hour to the drs, picking up some groceries) My ex has been trying to find an opening to get back into my life (I think he figures since I have lupus he could control me easier) and some days it seems like it would make my life easier, but financial security wont make up for the emotional toll it would cost.
Sometimes there is nothing to do but laugh at the absurdity…my ex husband just tried writing a motion to the court to get out of paying child support ( I have never gotten or asked for spousal support ) by saying he thinks I should do more…that “she should work-- she can walk, she can drive”. Hahaha well I have to use a walker, and the dr knows I drive around town for errands but does not like it and does not approve of me driving any differences. But where is his logic?? Lol
i have to say an amen to that keepgoing
keepgoing said:
I guess I was hoping if they could understand, that maybe they would be willing to help me when I need it. (driving over an hour to the drs, picking up some groceries) My ex has been trying to find an opening to get back into my life (I think he figures since I have lupus he could control me easier) and some days it seems like it would make my life easier, but financial security wont make up for the emotional toll it would cost.
Thanks for sharing “The Spoon Theory.” As a caretaker, it is frustrating and painful watching other family members or people judge my daughter based on her looks and not on how she felels. Bless all of you warriors fighting Lupus. I pray for all of you.
i have no support either accept for dear husband, he has RA and got it in his 40's so he knows what it is like to be in chronic pain. im sure ive told this story but i have been sick since late 90's with no answers. went to a rheumy that told me (with my husband in the room) that i had fibromyalgia and that it is psychosymatic, needless to say he used this against me by telling all family and friends the doctor said i was crazy and that it was all in my head, including my children. Needless to say my marriage of over 16 years ended (best thing that could have ever happened to me) (he was abusive and making me sicker!!) since i have been sick for so many years i have no ones trust i guess is the best way to put it or they are like your still talking about that or shouldnt you be better after all these years, or this is the one i love, cant they give you something for that, lol, i wish they could, so i just dont talk about it anymore, i dont need for them to know when i am sick. saddest thing is i stayed with my high school sweetheart way too long and his children picked up some of his behavior, they are 21 and 23 now, they dont treat mom so good sometimes but i am working on mending our family and they do live with me and dont see dear ole dad too much lately because they are figuring him out now, it is really sad. thx, kel
Kel,
When I hear stories about what you went through it makes me so frustrated. Where do doctors get off telling someone it is Psychosomatic. If they don't know what is wrong why not just be honest and tell you to get a second opinion. I guess that would be too much for their ego...
My first husband passed away when I was 31 of cancer. He was so sick and I remember calling his doctor and he told me that my husband wasn't sick he was just depressed. I raised my voice a little louder on the phone and said "Yes he is depressed because he is very sick." He finally agreed to do some more blood work on him that day and then found out he had cancer. Do you know that doctor took full credit for finding the cancer and my husband's parents to this day say what a wonderful doctor he was!
It is very sad that people tend to believe what comes out of a doctor's mouth as law when some take it so lightly to give an opinion.
You shouldn't have to prove you are sick to anyone. Loved ones should take the initiative to educate themselves on our disease if they really care. Hope you can get your family together again. I wish you all the best.
Sending you hugs,
kel said:
i have no support either accept for dear husband, he has RA and got it in his 40's so he knows what it is like to be in chronic pain. im sure ive told this story but i have been sick since late 90's with no answers. went to a rheumy that told me (with my husband in the room) that i had fibromyalgia and that it is psychosymatic, needless to say he used this against me by telling all family and friends the doctor said i was crazy and that it was all in my head, including my children. Needless to say my marriage of over 16 years ended (best thing that could have ever happened to me) (he was abusive and making me sicker!!) since i have been sick for so many years i have no ones trust i guess is the best way to put it or they are like your still talking about that or shouldnt you be better after all these years, or this is the one i love, cant they give you something for that, lol, i wish they could, so i just dont talk about it anymore, i dont need for them to know when i am sick. saddest thing is i stayed with my high school sweetheart way too long and his children picked up some of his behavior, they are 21 and 23 now, they dont treat mom so good sometimes but i am working on mending our family and they do live with me and dont see dear ole dad too much lately because they are figuring him out now, it is really sad. thx, kel
yes, it does me too aunt pearl, i am at that stage where i am so angry and i am trying to let it go- i got a diagnosis in november 2012-what worries me is just how much damage i may have that has gone undiagnosed for so long, i guess that is what we are now trying to get to the bottom of. Now when i see th rheumy tomorrow she is going to see that i have new symptoms and probably treat me for the lupus, or i am going to ask her too that is. WHAT I WOULD LIKE TO DO is call my ex and tell him what a looser he is and that yes i was sick all that time. At the height of being sick he lost his job, insurance, we lost our home and moved 6 times, i had a nervous breakdown, then after more than 16 years of marriage he left me for a 25 year old with 3 kids-a nurse in the hospital told me one day i would laugh about it and she was so right, that silly young women he met and married did me the biggest favor in the whole world and i feel so sorry for her kids because they are being raised by an abusive man, another cycle of abuse and violence i am praying my children did not inherit. they live with me and we are working on it, my new husband is a wonderful man, he is a moral/spiritual man has become sort of a mentor to them, i am hoping as they get older they realize that how we were treated is not right thx
Thank you everyone who has posted their experiences. I am really thankful for finding this group because now I finally feel like I am understood. I cant even begin to describe the weight that has been lifted knowing I have somewhere I can turn. Big hugs to all of you :)
I am going through this now my family thinks I’m just being a baby and that is so not the case I hurt