Lupus is so underestimated by so many people.

[emma40e]

I have Systemic Lupus in a very bad way. I also have mild Discoid Lupus. On top of that I have six other autoimmune diseases. What I really don't understand at times is why when you have explained to people over and over what the disease or rather diseases are doing to you and how you feel on a day to day basis, these people that just don't get it, say things like well if you just get everything done in one day, then you can rest the following day if you really have to. They really don't get the exhaustion factor and how even one task a day can wipe you out for days. None of us want to be like this, but i get the impression from what some people have said to me, is they think I am just making excuses to not do essential things or I am just plain lazy. I have to have care now on a daily basis. I cant do the simplest of things some days. Do these people really think I enjoy having care instead of being the person I used to be before I ended up with all these things. I miss not being able to do the things I used to be able to do. I used to run, cycle swim and go to dance classes. I can no longer do most of those things. Very rarely I get to go to a disabled swimming club. A far cry from the fit person that I used to be. I have had to find less active things to enjoy. Taking more pleasure from the less active type of activities. To be not accused, but to have people say how lucky I am not having to work and to be able to lay around all day if I want, is insulting. You feel like saying, we can swap for a few days. I am sure you would be begging me to take my life back and give you yours back. You have to be strong to deal with having Lupus whether you feel strong or not. I don't always feel strong but we have to be strong even on the days where the strength just isnt there. Thank you to whoever reads this.

[buzzards]

Sorry you are having a tough time. Yes I find people forget that lupus is a chronic illness and just because we can look well, it doesn't mean we're not sick. Symptoms change frequently as well and unless you're going through it, it's hard to explain how frustrating it all is. Today I am meeting a friend I haven't seen for some time but I'm in a lot of pain and would rather stay home. Instead I will go as I don't have to go very far and it's good for me to see people.

You're right, we have to be strong and it's exhausting. Sometimes I wish I had someone to lean on and pamper me. Instead I have to get on with it as I don't have a partner or children. This forum is a lifeline. I hope you feel a bit better soon. Best wishes.

[Dessi72]

Dear Emma40e. I am so sorry that you have such complicated health issues and wish for your old life back and to be able to normal chores etc without feeling so exhausted. I know exactly how you feel about people not understanding how your symptoms affect you and how frustrating and annoying this can be. I have gone through that and learned that this type of reaction from other people can and does make you feel worse and stress and anger can bring on a Lupus flare. Try not to let people annoy you but I know this is hard but it is better for you, Turn your back on them, don’t discuss how you feel and walk away. You didn’t mention about a Lupus Clinic and how they are helping you to control your health issues but I sincerely hope that medication will start helping you and you will start feeling stronger and determine to not let you illness get the better of you. Learn when to rest and when you can do things. I also use to dance, exercise in the gym every second day, train in Pilates, yoga etc and now because I get so exhausted find walking is best for me, I still become tired but not exhausted as I did doing gym etc. I have had SLE since 1973 and finally when they found drugs that suited me, I live a better life but still cannot do what I used too and I have accepted this and manage my life to fit in with Lupus off days. Take care and I do hope you find some relief in your symptoms soon. Keep in touch and let us know how you are keeping. Gentle hugs being sent. x

[butterfly1964]

Hello emma40e,

We all feel for you and I personally know exactly how soul destroying Lupus can be. People don't understand our illnesses, because we look well on the outside, it's certainly not the case inside. I have had Systemic lupus and nephritis for 22 years and my journey as been eventful, to say the least.

I try to be positive and push myself to have some kind of a life, mainly for my husband, who has road the Lupus rollercoaster with me, with the unpredictability of the condition.

So don't think your alone, we all know how debilitating it can be...

Best wishes jx

[dawnisup]

I feel you totally. I have very nearly the same as you and probably the same auto immune diseases you refer to. A good way I have found when speaking to others is what they say: e,g "How did you manage that IF you are so ill"? When they say IF and not AS, you know there is a measure of doubt from them. It's a dead giveaway and one the speaker is not even aware of. Beware of the "if ers" around you and don't bother to try and explain it anymore, they probably don't count for much in your life anyway and you can do without their doubt. Do your best and no more; those who love you and know you, believe you.

Good luck my dear and avoid the negativity.

[jetjetjet]

HI Emma -- I don 't have Lupus but i a an APS patient and i notice how so many of the symptoms are so much a like. Both the disorders are bed fellows. I have been tested many times for Lupus BUT always comes back negative. I am considered an APS triple positive primary. AS i read some off the lupus problems people have {it comes up on my Health Unlocked } So i know very well how you feel .My INR'S that i have to do twice a week and will be that way for the rest of my life . WE also get the " you look so good !! But we are rotting from the inside out . Is my reply to that statement . Well best to you. i don't hardly ever reply to this site BUT I thought I would answer you. Best to you and all your people o Here .

C & J Here in Penacook N.H. USA. BBN

[Cas70]

Oh Goodness, I know how you feel, it’s awful. I have given up trying to explain. I now say “my immune system is attacking me” sadly there is so little publicity about our suffering. I have found a local support group brilliant - to be amongst like-people who understand. I really hope you find that. Good luck

[Milliecox]

It is really difficult an example you could use is flu - nearly everyone has had flu and make the comparison - they are birth inflammatory and make you feel horrible but it’s diffi with people like tat, including clinicians who know nothing about lupus, get all the support you can get to live the best life you can.

[maye1]

I know how you feel. It’s putting the blame on us. I was off work for 2 months on disability - had never been off on disability before - and when I went back to work, one of the women said that I was so lucky that I got lay around all day.

People are ignorant and insensitive. We look well and it scares them that if this could happen to someone who looks well and has a healthy lifestyle, that this could happen to them. So they twist it in a way like we just need to do more, try harder etc...

I’ve learned to keep those people at a distance and I invest in friends who get it and don’t need an explanation when I don’t feel well. I find people who have or are dealing with their own health issues to be “safe” relationships.

Sorry you’re going through this...

Xx

[Gmagolf]

It’s frustrating to say the least. Especially when you go from being fit to hardly moving. Hope you go into a long remission soon🙏

[Milliecox]

Thanks Philippi I think it’s important to help people understand how it FEELS to have lupus the fatigue malaise etc simply telling them the pathophysiology does not do that. Fluctuating illness is easier to relate to if you find examples in your own experience... that’s how I do it is

[Hidden]

emma4e if your arm was broken, it would be in a cast and people could see what’s wrong. Unfortunately people can’t see a physical ailment with us. My husband is darling. He sees the good days and bad days and knows the person I use to be and what I would do with my day. But even he commented the other day that he’d like to trade places with me so that he could ‘watch movies all day instead of going to work’. I told him I would never swap places with him, that I love him too much for that. It snapped him back to my reality.

My family went to Big Bear end of July. Kids, grandkids, all but one of my son’s families. There were 16 of us. Every afternoon I snuck off to nap. Yet, one of the mornings we took an exhaustive hike to Castle Rock. My Fitbit recorded 24 flights. It was boulder after boulder of climbing. When my second oldest, Austin 35 saw me struggling, I think it freaked him out. He is use to the mother that always hiked with my kids since they were little. The mom who was his Boy Scout Leader. The mom who was strong and could conquer just about anything. When sneaking off to nap, or avoiding activities with the family when I’m having a flare, they don’t see what I’m going through. I think that unless someone actually sees physical signs, they don’t understand, at all. Even in seeing the physical signs, they don’t fully understand. They don’t understand that when you conquer one symptom for awhile, another immediately pops up. They don’t understand that you force a smile on your face everyday so no one else feels your pain and worries about you. They don’t know how frustrating it is to constantly be battling one thing after another. Like those boulders on the hike, getting to the top of each only exposes more boulders to climb. Never ending boulders. Except, on the hike the boulders did, eventually come to an end and there was an incredible vista of the lake and the forest trees. But with Lupus, our incredible vista won’t be until it’s all over. And like the hike, we have to vigilantly keep climbing and not give up in order to see that beautiful view. But for those not living it, it’s hard for them to understand. As far as friends and family, that’s the way I like it anyhow.

My daughter Sagan is working on her Master’s in forensic psychology. I think she is the one who understands it the least and gets frustrated with me. I’ve always been the strong mom. I think her denial is a coping mechanism for her.

Best of luck. If you figure out how to help others understand it, please let us know. I also have a hard time understanding it, and I’m living it. But until that time, we have each other. Thank goodness.

I don’t like to dress up for Halloween, but I think this year I will. I am going to go as myself. I’m living a daily nightmare as myself, so why not? 👻