I just had dinner w my best long term friend and she pointed out that another friend of her has lupus, is an avid runner, and is seemingly unaffected by the disease. I, meanwhile, am on 12 medications, can barely walk, and am losing my hair at a rapid rate. Am I wrong to be frustrated that my friend doesn’t understand what I’m going through?
I'm so sorry....I've found that people don't seem to understand the disease. I have had people compare me to others as well. Send your friend some links that you find helpful in understanding the disease. Ask her to get on a site to talk to other luppies. Maybe you can help her understand.
I agree ive had lupus for over 30 yrs ive been in remission some people dont understsnd I went yr without ins so just delt with it now im running into that again is thrre natural things to take and to help bgp snd thyroid
I agree you definitely find out who your friends are and aren't and it is better to distance yourself from people who are very insensitive. Unfortunately we can't always do that with family. It seems to be so common among people and really you can't distance yourself from everyone. I like the idea of patience with the people we care about the most. Hopefully, they will eventually come around. My sister once told me that she didn't believe I had Lupus because I wasn't as sick as my sister in law who has lupus. I had to explain that my sister in law has had it for 25 years and I've had it for maybe 7 years and I was only diagnosed two years ago, and that people have different experiences etc. I don't know if I got through to her or not but I like to think I did. The truth is I don't look as sick as I feel. If I did, I know that people would be more understanding. This disease is just very frustrating!
I am going through this too. It really bothers me that my grown child who I have always had a close relationship with is also among those that don't understand what I am going through. This is even after going into the hospital 4 times last winter due to it. Once I had to have fluid drained off my heart (pericardial tamponade). 3 weeks later I was back in for fluid in the sac around my heart again so they used a chest tube to drain it and cut a "window" in the sac so future fluid would not collect in the sac. So guess what? A month later the fluid was in my lung, so I had to have another chest tube to drain that. The 4th time it was for a blood clot. After all that, people don't take it serious because I don't look sick. I have one friend of over thirty years that has stood by me. She listens to me and gets me out of the house sometimes when I am feeling good. She is about the only. Even my super religious friend of 25 years has stopped calling. It's my family that bothers me the most.
Thanks for letting me vent.
Have a nice day.
Recently my brother in law said he has a friend who has Lupus and she was able to work yadda, yadda, yadda. He was trying to be encouraging, but it didn't feel that way at first. I try not to take it personally, but its hard. You can lead a horse to water, but you can't make it drink..... when friends and family 'want' to understand, they will ask. I have asked my husband to come here, and he will look over my shoulder sometimes but that's about it. But he is very empathetic with me, and makes sure I take care of myself.
This is the place for us to come and vent, or get advice.... I'm glad you posted this discussion....
This is like how some people don’t lose their hair during chemo. Nice for them, but not what can always be expected.
Of course people without an autoimmune disease don’t understand what we go through. I don’t have cancer, so how would I feel if a cancer patient got mad at me for not understanding what they go through? I hear this complaint all the time, and while I know what it is some are hoping for from friends and family, I don’t know why it is that anyone is having a hard time figuring this out. Loved ones are saddened and uncomfortable because we are in pain, and because our lives change so mysteriously and rapidly. Does anyone here feel like they even understand what they themself are going through with their own illness? I sure don’t. We live at the unpredictable whim of an unseen enemy - one that can and will at random either keep us constantly irritated, or even try to kill us. If you have that figured out, and think you even understand it, then maybe you can come up with a great way to explain it to people that don’t have it too. We get support from others that have autoimmune disease too. What we need from loved ones otherwise is just love. Sometimes it’s too easy to blurt and inappropriately weigh down someone incapable of processing it. If you feel the need to talk to a friend or relative about it, maybe you have to preface it and say that you don’t want or need input, advice, suggestions, etc… just an ear.
If I sound blunt, it’s because I have seen far too much fret about what people that don’t have Lupus say. If they’re wrong, then correct them. If you’ve spent enough time talking openly about the horrors of the disease, then you should be also capable of continuing to speak openly and explain that it varies broadly for all patients. I make it a point to tell people that I am in remission right now, but it hasn’t always been this way… and also that there are people for whom it is much more severe. When someone says so and so works and seems ok, take the opportunity to educate for awareness and run with it. Tell them that is GREAT and you’re happy to hear about the people that are blessed enough to have that kind of control back in their life. Say it’s what we all hope and wish for (because it is, of course). Tell them it’s not always in the cards for everyone, and Lupus is so wildly unpredictable that a day can change from “ok” to death’s door cocomplications.
We are the ones that decide if we’re going to adapt and thank God for whatever blessings we are given - starting with having breath in our lungs to speak with and be a representative for those no longer able. We can either get pissed off or get involved. Develop the patience of a 1st grade teacher and realize that we do each have a purpose, even when much else has been taken away. We are presented with opportunities all the time. If someone suggests that there is some pill, exercise, or food we need to try, that’s our opportunity to explain why not. If you get mad, they’ll feel it even if you don’t say it. If you shut down, they will too. Then what is gained? Yes, I’m challenging everyone. I’m challenging you to be the bigger person. If you can survive living with Lupus, you can survive a conversation with an uneducated person long enough to help them learn something useful. This is the small stuff. Don’t sweat it. Save your energy for staying on your feet. Otherwise you’re just throwing spoons away.
I go through this too. People always want to minimize it but like Tala said, I think it’s their way of being hopeful for us, even though it doesn’t feel that way. I recently began to talk to my family about being more descriptive and open about the horrors I do go through and to stop sugar coating it to others. Talk about the intense unrelenting pain and fatigue, about all my hospitalizations and how bad it all really is. Talk about how one day I can be up walking around and the next literally can’t get out if bed. We all need to be great story tellers to everyone and stop being so darn private about our health! It doesn’t help any if us! We also need to explain like all diseases no two people are affected the same and that’s WHY they call this disease “Mysterious”. Finally print off information you find, save Emails from other lupus sufferers ( with their permission of course) and share share share all the educational material you can. We must all become extremely active so we can get the publicity necessary for funding research to get better tests and meds developed so we CAN have medicines to get us into remission! Lets go group! Talk about it even if no one appears to be listening…I bet they hear more than we realize! Hugs-Tina
I can say me too! I think that autoimmune diseases baffle people.
While I was still working, friends at work wanted me to meet so-and-so who was cured of lupus with a natural diet, fasting, eating herbs, wholistic therapy. When I would ask to meet "so-and-so" there was always some excuse like not in town, moved, haven't heard from them in a long time: on and on. I would think to myself what lucky people to go into remission for whatever reason.
I've lost family and friends. The one friend that remains, a nurse, refuses to visit me in the hospital. She see's what I'm going through and understands at an intellectual level about how complicated things are for me. There's still an air of that I'm too dependent because I can't keep up with the crew. Yet other close friends have backed away because I had to give up my house in the country to be closer to medical care in the city. They would actually lie to me that they would be in contact. Oh well, I don't hear from them anymore--friends since college even.
My sister's kids (nieces and nephews) think I'm weird, especially since my sister passed away a year-and-a-half ago. So much for family that I thought I had. I actually grew up with them like brothers and sisters. My sis was 22 years older than me.
My ex-husband has really been here for me, surprise! He pinch hits for me taking care of the dogs and my apartment when I have to go in hospital and brings me to and from Dr. appts. I get lots of infections. At least someone is there.
I'm mostly house-bound so it's not easy to go out and meet people.
On the bright side, I've been taking watercolor painting classes at night, meeting people to talk to. And, making some progress in picking up my artistic skills. I'm pretty spastic when I walk due to a broken back and a sour hip that both make me walk with a funny limp. People don't bug me about it and I don't offer. I also can go out of the house without worrying about sun.
You got to hold on.
Lupus is different for everyone from mild to severe. I wouldn't judge your friend too harshly she probably doesn't know anything about the disease & needs some education. She shouldn't be comparing you with anyone maybe your friend with Lupus is in remission which can happen for long periods of time
I think it's perfectly normal to feel bummed out when people don't understand. It is sad and frustrating when the people you care about behave in ways that are insensitive no matter what the excuse. This is a great place to come to feel heard and understood.
I agree wholeheartedly with Tala. The first BIG lesson I learned was to stop letting what other people say be so bothersome to me. They will learn or they won’t but its their problem, not mine. You have to accept and live life with your well being the first thing you think about. You have to be in charge of your life and disease.
I've been in hospital with meningitis, pleurisy and recently pericarditis in the last 9 months alone, and all I ever hear is "but you look so well!" But I do agree with tinapet that education others is the way to go. I wish it didn't bother me so much as I'm actually pleased I look OK, despite everything!
Denise, I have had people compare me to others too. It has added to me being more of a loner. Email her and tell her that every person with lupus is different, and even in 1 person it changes from day to day, and that you are happy for that other friend and hope she never gets as bad as you. Also send this story that explains what we go through. Not everything, but it's a hint about how difficult every little thing is for many of us. www.tinyurl.com/spoontheory1. If it's not on the page right away, look across the top of the page and click where it says "Spoon Theory".
well said. It is probably not a personal attack but just ignorance about the disease. People don't know much about lupus, and it really is a spectrum of how severe it is from person to person, and even over time in each person. But if she keeps coming over and saying things like this and really is implying that you're some kind of lazy do-nothing, then the illness has to become a non-topic, or the friend needs to be a non-friend.
OC GAL said:
Lupus is different for everyone from mild to severe. I wouldn't judge your friend too harshly she probably doesn't know anything about the disease & needs some education. She shouldn't be comparing you with anyone maybe your friend with Lupus is in remission which can happen for long periods of time
My boss used to tell me how he had a friend with lupus who was fine and still worked and did everything he used to before lupus and how the only medication he used for his lupus was a cream. I pointed out to him that his friend probably had discoid lupus and not SLE. I told him to ask his friend which he had. He never did. His friend could have had SLE, too and like most of us, didn’t look sick.
I have found that there are some people who just don't understand but are open to learning about Lupus. Then there are people who compare and judge and aren't open to learning or understanding. Often, I think family members are scared and want us to be better and so compare to see if they can snap us out of all these symptoms...it would make them feel safer if we could. Some people I give understanding back and we continue with our relationship. Others I leave behind. Family members I confront. I think people who compare us to other people (relationship/s we want to keep) need to be told how hurtful the comparisons are and ask them to stop.
I hate to see anyone go through this. It's like comparing people with any other illness: i.e.- cancer, heart problems, diabetes, etc. There are no two cases the same. Just because you can't see it daily does NOT mean it's not there. We're no different. You can't compare 2 people with the same illness and assume that because one fares differently from the other that their illness doesn't exist. I don't know what it takes for people to understand that this applies to all illnesses. And what about mental illness? It is real. You can't see it.....Ok, ok...I'm climbing off my old soapbox now. Sorry to get riled. Just wanted you to know that I understand you well.
Amen to this! I couldn't agree with you more. It kind of goes back to the 'spoon theory'. You have to decide what and in this case whom is worthy of one of your spoons.
susanjs said:
I have found that there are some people who just don't understand but are open to learning about Lupus. Then there are people who compare and judge and aren't open to learning or understanding. Often, I think family members are scared and want us to be better and so compare to see if they can snap us out of all these symptoms...it would make them feel safer if we could. Some people I give understanding back and we continue with our relationship. Others I leave behind. Family members I confront. I think people who compare us to other people (relationship/s we want to keep) need to be told how hurtful the comparisons are and ask them to stop.
This is a great discussion. For me it covers some of the hardest emotional issues that I have to deal with.
Even my shrink thinks I'm headed for disaster because I moved to the city and gave up my house. Since I moved here one year ago, I've been in hospital twice and had also had to have IVs for cellulitis in outpatient secondary care. If I'd stayed in the mountains--where no medical care is available--I would have succumbed to these infections due to lack of transportation and access to reasonable medical care.