My family never asks me about lupus but I overhear them say, "so and so has lupus and is doing fine". I've missed so many family functions through the years & have overheard comments like "she needs to get out more". All I know is that they know I need my sleep and avoid the sun.
I have CNS involvement (which is the hardest of all my symptoms) and my family (other than my two members of my family) don't know that because I just don't randomly bring it up and they don't ask. I also work >40 hours/week and that used to take up every last bit of energy. I am now am getting back to life and life outside of work as my meds are finally working but I still have bad days.
I just wonder what my family thinks because it's important that they understand--and comments like the above make me frustrated.
It would be weird for me to just bring up and very awkward to provide brochures to educate. I just don't want my family to think it's in my head. I went from being an athlete to needing to sleep all the time and missing so much in my life.
Do I just stop worrying what my family thinks of me, or do I attempt to explain?
I understand where you are coming from. My family is the same my sister asked me the other day if lupus was cancer and if I was sure they diagnosed me right because someone from her work has lupus and is “just fine”. It is frustrating enough to be sick and not have them understand but then to feel as if they are almost questioning you is even worse. I am sorry your family doesn’t seem to get it. If you find a good way to help them understand I could sure use the advice as well. Good luck to you
I understand too. Sometimes I feel crappy when I’ve briefly told friends (consider them my family) about lupus and what it means for our relationship and my life, and some of them just said nothing. It was almost worse than having them say something that was off the mark you know? I know it’s discouraging. The official lupus places that we can look at and know specifically what things to say when we “tell” others about our deal-- the things you see over and over again-- those are definitely necessary for both our sakes and our family/friends. But also, when they just don’t respond the way we’d like, with compassion and a little understanding, try to remember…hey, we, as in all of us in this support group, we are here and we know exactly what the deal is. We can be the surrogate for all of those who make unfair judgements and just don’t understand. So at least, you have us and me, and anyone else living with diseases like lupus. I hope that makes you feel just a little better! We have to figure . Out the balance between making sure we are as clear as possible on letting our important people know what may occur with us having lupus, and not letting it become a burden or weight that we absolutely don’t need or deserve on top of our health situations! I don’t think there is a definitive “what to do” answer. But try your best and leave it like that.
I sympathize with your plight. I also went through the same thing with family and friends. "But you look well most of the time!" My solution was to use the link at the top of the page that allows you to invite people to this site by entering there email into a "fill in the box". I sent this to a couple people and it opened there eyes and explained things I couldn't express to them myself as well as them reading these blogs and seeing what people with Lupus are going through. I found these people were more willing to ask you questions regarding how you were and how it is affecting you after reading some of these messages. Hope you are as lucky as I was in people understanding what we are going through. Hope this helps... Good luck...
I read a book titles "What you think about me is none of my business"and ever since the. I remember this! However, some of my close family, I value their opinions and advice. It has helped me tremendously!
Lupus and other auto-immune disorders can be very socially isolating and disruptive of important relationships. I talk with chronic face pain patients frequently who express your sentiments, Lilac. I don't think there's any magic for helping others to understand, or helping yourself to bear with those who flinch. But one approach comprises both a statement and a question.
"I know that many people seem to have a hard time being with me when I'm not feeling well. But I value and need your company and concern and support. Would you like to know a little more about Lupus and the people who have this disorder? No two of us are quite the same..."
While I am very sure there are many reading this that think you were actually writing just to them. That is what I thought when I started reading your post. Fortunately, my family is very small and I have been fortunate not to over hear any comments like you have. But boy, could I SO relate. My background sounds a lot like yours. I am a 1st degree black belt and was training for my 2nd degree. I had my own business. I was in over drive all the time and loved it. Then cancer hit, which brought the Lupus out of the shadows, where it had been staying…for the most part. Well, ended up having to close my business. Exercise ceased like hitting the brake while going 100 miles an hour. Anyone who doesn’t have this disease cannot possibly know what it is like. At times, when a friend or family member tells me they have the flu…and go on and on about how terrible they feel…I take that opportunity to tell them that I really hope they get well quickly because that is how I feel A LOT, except the pain isn’t just ‘achey’ …it is deep bone pain (at least, for me). That has actually made several people pause… Then look at me and tell me how sorry they are ( NOT that I am wanting sympathy. I HATE sympathy) I, like you, have been struggling to work full time, while 'having the flu ’ that doesn’t go away. I too, am just barely beginning to get a life back. And I do mean barely, because working over 40 hours a week is more than draining. I do thank God, though…that I can work ( it was real touch and go there for a few years) because I know there are MANY, just on this site, that are not so fortunate.
My suggestion would be to have your family read a lot of posts from this site. I just happened upon it and joined. It wasn’t until I finally began reading a few posts ( now I read all of them) that even I began to get a reality check that this is not going away and it is a miserable disease. I’ve been really working on living in denial…or best you can feeling exhausted and in pain all the time. It was here on this website that I realized I am not exaggerating, not a wimp, not big baby, …nor is this going away. The more I read, i have begun to have a fuller understanding that I found a place that I am not a anomaly, but instead, I am like a whole lot of people.
Hopefully, having your family read a lot of the posts, they will really ‘get it’ and realize that you are actually doing better than so many others. This site sure offers a different perspective to anyone who takes the time to read it.
Prayers for you and everyone in this group. God sure holds me up many a day.
I understand too. Sometimes I feel crappy when I've briefly told friends (consider them my family) about lupus and what it means for our relationship and my life, and some of them just said nothing. It was almost worse than having them say something that was off the mark you know? I know it's discouraging. The official lupus places that we can look at and know specifically what things to say when we "tell" others about our deal-- the things you see over and over again-- those are definitely necessary for both our sakes and our family/friends. But also, when they just don't respond the way we'd like, with compassion and a little understanding, try to remember..hey, we, as in all of us in this support group, we are here and we know exactly what the deal is. We can be the surrogate for all of those who make unfair judgements and just don't understand. So at least, you have us and me, and anyone else living with diseases like lupus. I hope that makes you feel just a little better! We have to figure . Out the balance between making sure we are as clear as possible on letting our important people know what may occur with us having lupus, and not letting it become a burden or weight that we absolutely don't need or deserve on top of our health situations! I don't think there is a definitive "what to do" answer. But try your best and leave it like that. :)
I honestly would try to explain it to at least immediate family at least once .if they dont want to bother to listen or take the time of day to TRY to understand you then thats on them.its always a little easier if family understands if my joints hurt my mom massages my feet or arms,she reminds me to take my pills,she does everything in her power to try to make me feel a little bit better.shes my backbone.i know what you mean people think because we hold it together or because they cant feel the horrible pain we do .that were fine .but we just need to tell them well i'm not fine !lupus sucks!
I can’t relate because I have a very small family and they are all very supportive especially when they all saw me at my worse before starting treatment and was all swollen all my joints, face, eyes, blisters all over my hands in my nose and mouth. Could barely walk and could barely hold a utensil to feed myself. Think once you see that you consider someone sick but if to them you look fine physically on the outside your ok. Think if it bothers you you should talk to them about it remember that stress only makes things worse I wish my family didn’t have to see me that way especially my hubby, and kids,and mom she has always been a very strong woman she is a miracle of science herself. Has survived cancer and heart disease a quadruple bypass diabetes and so much more and I hope I can say I have half of her strength getting thru this so far and what is too come. I always stayed strong and didn’t cry from so much physical pain that never in my life think I could ever have and survive and here I am plus I didn’t want to stress them out more could see it in there face how stressed and worried they all were my in laws too. So I am very thankful to God I have such a wonderful and supportive family so now when they see me they tell me I look like normal again but we do discuss the type of LUPUS SLE that I have my doc appts and what is expected I don’t tell them too much because I don’t want to freak them out rather take it symptom at a time and enjoy the good days;) like my hubby says will cross that bridge when we get there one step at a time. So like I said speak to them if it stresses you out good luck and god bless
That is a hard position to be in , I can tell you how I told my family. I invited them over for a meal, told them what I had and I did give them brochures and links to different medical web sites. we all cried and they have been my rocks for over 20 years. I hope I helped. God bless
Sometimes I think my family thinks that it’s all in my head, I have tried to tell them and give them information but they don’t see the symptom that I have and sometime I think they don’t care because if I can’t do things for them or cook or what every they look at me as if to say you have been home all day and nothing is been done. I also had back surgery six month ago and stilly ring to recup bit they don’t seem to care. The don’t understand that this disease can affect your whole. Body and all organs and can lead to death. I worked as a nurse for over 30 years, if I could I would still be working because I knew someone needed me and it made me feel good, now I feel worthless. Good luck with your family, I hope they care more than mine. Praying for you.
Something that I encourage all chronic pain patients to do: if you are ever referred by a medical doctor to a mental health practitioner, then confront the doctor. There is no such thing as "psychogenic pain" and so-called "psychosomatic medicine" is for the most part a collection of myths that isn't backed by any systematic collection of data. Depression or anxiety may make you more vulnerable to pain that has already developed from other causes, by disrupting your sleep and reducing your overall personal energy. But depression doesn't cause pain. PERIOD. The most that a mental health practitioner can do for you is to provide supportive therapy. You don't need a psychiatrist to do that, either. Some of the anti-depressive meds (notably SSRI meds) can be actively dangerous to your health on multiple levels.
I wish my family didn’t have to see me that way especially my hubby, and kids,and mom she has always been a very strong woman she is a miracle of science herself. Has survived cancer and heart disease a quadruple bypass diabetes and so much more and I hope I can say I have half of her strength getting thru this so far and what is too come. I always stayed strong and didn’t cry from so much physical pain that never in my life think I could ever have and survive and here I am 
one step at a time. So like I said speak to them if it stresses you out good luck and god bless