This disease has impaired me to really have a social life let alone any friends,It is hard to plan anything with lupus because from hour to another let alone a day you don't know how you will feel.We all try to push ourselves and we donot want to be labeled as whiners.Sometimes I feel or use to feel that people would think of me in that format and label me.We only know how much our bodies can take yet we still donot really have a social life and some of us are not able to work because of this disease and yet it is so hard to receive our ssi.I see so many others on facebook or instagrams traveling or with family or friends,So many times I want to make plans to go to a concert ,something small event and if you buy a ticket early have a flare then money is wasted and Lord knows I don't have a lot of that and now you are depressed you cant even go.Alot of people donot want to be bothered with you when they don't know or don't want to believe your situation so you are alone at times.Thank God for my mom still being here and understanding. You all play a big part too.
I really relate to what you’re talking about here. Seems like now that I’ve been diagnosed, I spend a lot more time alone. Is’s hard but I sure do appreciate the people got it stuck it out and my dog who is pretty much my best friend now. This site is a great help too and all of you on it. Here’s to all of us having all the support and love we deserve!
It can be lonely/isolating. BUT hobbies do help when you are feeling up to it. 
I know how hard it is to have friends...people think I am unfriendly...but in fact it is difficult to remember what I want to say...by the time I get a chance to say it. I have been alone most of my life...after kids were grown and gone. At 72 I married a man who does not yet
understand what is wrong with me (hey I don't it is always something slightly different)...but He is patient, loving and willing to be there for me. He is my best friend, child and husband all in one.
We met online...I married him at age 72...so there is always hope. I also believe that even in the worst of situations
there is always a blessing...sometimes don't see it for years but I know one is there.
Yeah I have a dog too he is 14 years old I pray everyday he lives another day as well as myself and my mom,basically he`s in my prayers,when I was diagnosed with lupus in 2012 and confined to my home for 7 months he helped me through it ,loving me unconditionally.I paid so much attention to him that I didnt think so much about me and I looked forward to seeing about him on a daily basis ,I am sure he loved the attention.
heymj said:
I really relate to what you're talking about here. Seems like now that I've been diagnosed, I spend a lot more time alone. Is's hard but I sure do appreciate the people got it stuck it out and my dog who is pretty much my best friend now. This site is a great help too and all of you on it. Here's to all of us having all the support and love we deserve!
Thank you so very much I appreciate the response,when others respond it gives you a different outlook.
Wingwalker said:
I know how hard it is to have friends...people think I am unfriendly...but in fact it is difficult to remember what I want to say...by the time I get a chance to say it. I have been alone most of my life...after kids were grown and gone. At 72 I married a man who does not yet
understand what is wrong with me (hey I don't it is always something slightly different)...but He is patient, loving and willing to be there for me. He is my best friend, child and husband all in one.
We met online...I married him at age 72...so there is always hope. I also believe that even in the worst of situations
there is always a blessing...sometimes don't see it for years but I know one is there.
AMEN! You described my thoughts 10 times a day!! My Mom is still here and understanding too. I could have written this.
Is it possible to have a lupus meetup? I don't mean a support group, but some people with lupus joining an activity that they can tolerate? Might it be an opportunity for socializing?
Just a thought.
It is a great idea...but think we may be in many different areas. I use to get together with a few friends that had autoimmune issues...we played Rumikubes or hand and foot. Had lots of laughs.
My tip for the day...The Rule of Three...each night especially in flare up...I make a list of three things I will do the next day.
It might be something easy like read from a inspirational book, or pay one bill, or clean out one drawer...too more difficult
like clean ref rig if feeling better. What I find is it helps get me going and when I am busy I feel better. I am kind to my body and after the three things I go back to bed if need to. However, most of the time I feel like doing more once I get started.
I am a recovering Type A! You all have a great day and find some Joy!
You wrote this very well. I am in the same boat. I feel so alone. My mom is the only one who understands and I can talk to.
My husband had me in tears last night because he dont get it and I don't vknow if it's denial.
He told me I need to be in the sun and I need to eat. Two of the things that make me deathly ill. Then said I like being sick. Yah I enjoy being stuck inside watching the world go by and losing friends.
Sorry needed to vent.
How do you get family members to understand?
You speak the words we all have felt and said before. I have a wonderful husband that has my back at all times. He lives with me and knows every nook and cranny of my illness. Two weeks ago, I have three things planned and had to cancel every single one of them. I slept most of Mon and Tues then had a migraine on Wed. Thurs came and I was trying to recover from the flare and Friday I had a Dr appt for my next Benlysta infusion. This week has been good. Although I have no plans except two Dr appts...I was able to work a little in the yard, do some dishes, straighten the office that I can now see the top of it. I was able to do a couple of errands and after that, the next day I did nothing but be in my PJ's. I totally understand and I know that the ones that don't see you a lot or that don't understand, nor try to understand will bring you down. Think of all of us here that go through the same thing. Just breathe, take one item at a time, listen to your body and not others or the negative thoughts in your head. Read the spoon therapy. It helped me so much. It's an easy read and very helpful in not only explaining our illness to others but to remember our own limitations.
Trial and error. No one person in our life is going to react and believe in the same way as others. It's the approach you need to take with each person. I'm surprised about your husband. I am very fortunate that my husband understands completely and is always there for me through it all. He is the ONLY one that truly sees and gets what I go through everyday. I have one particular friend that I have, which doesn't understand no matter how much we talk about it. All she thinks is that it's side affects from all the medicines and if I just stopped taking them I would be fine. Then the next thing is about how the Lord can heal and that I need to focus on Him and that all I need is to pray. Every single word of that I believe and I know I need to lean on the Lord and pray for healing but if that's not what He wants in my life, I need to keep fighting the fight and do what I need to do regarding meds to help keep the flares down. So, there is just a different way to talk to each person and know their mind thinking on how to speak to them. I surely hope you will be able to get your husband to support you rather than put you down. When you said "like being sick"...hit a nerve with me. My daughter used to say that to me because she thought I just wanted attention. My husband and I sat down and went through all the things I have to endure on a daily basis and all the hospital stays, doctor visits, medications cost a lot of money and on top of that our insurance is very expensive. So on that note, ya, I love paying all these bills, taking time up with appointments and I surely love being sick so I can get attention. Hope my words help a bit. Hang in theres
Leighann said:
You wrote this very well. I am in the same boat. I feel so alone. My mom is the only one who understands and I can talk to.
My husband had me in tears last night because he dont get it and I don't vknow if it's denial.
He told me I need to be in the sun and I need to eat. Two of the things that make me deathly ill. Then said I like being sick. Yah I enjoy being stuck inside watching the world go by and losing friends.Sorry needed to vent.
How do you get family members to understand?
I color, crafts when my wrists are feeling good, I garden, and I journal here, and I do small things around the house as much as I can. Little baby steps, not overdoing it. If the dishes stay in the sink for three days, then that's what it's going to be. I used to be a perfectionist. All had to be in the same place, clean, neat, and in order. No more of that. My house is always dirty in one way or another and all I can do sometimes is look at it and then turn away. LOL
Donna said:
It can be lonely/isolating. BUT hobbies do help when you are feeling up to it. :-)
Thanks for the response. I needed to hear some good words. Im still hurt from yesterday. Im just tiredcof explaining myself. I can say I hardly complain I suck it up. I was down all weekend with a migraine and I kept my mouth shut. I did send the spoon theory awhile back. What I do not understand is he knows how serious things are. I take seizures have issues with my BP and then does this. There are days I need to be in bed but he thinks if he pushes me I will get better. Sorry for rambling, I am just frustrated.
Off the topic, but does Benlysta help? Im going to be starting Cytoxan. Have you tried that?
No I havent tried that,doctors wanted to take me off of the of the phenobarbitol since it had been over 20 years since a seizures,but than I got lupus in 2012 and this disease surely will create a interaction.Frustration is a common emotion when dealing with so many issues and vital concerns,my heart goes out to everyone who goes through this disease,I notice it is not as recognized as other diseases and wonder why when it destroys so many parts of your body.
Yeah I am still looking for work something light duty maybe working a job something to the effect of data entry or personel something maybe the tag and title office.,I was layed off my job January of this year after 11 years and a half of service no warning or nothing.I knew it would happened because my gm started treating me different he moved me to a area that was extremly cold and he knew I had lupus cause when i was out sick in 2012 I had to report it on my loa papers upon returning,He use to say I dont know what I am going to do with you,,My last posotion for the company I was a phone operator.,He moved me all the way to receiving which was a drafted area and I mean cold,I dressed in layers but and I had to walk bback there everyday and for my breaks all the way upstairs in the breakroom or I didnt get one, I was determined not to quit I said they are going to have to put me out cause i am not quiting or going to get fired.I was granted a severence pay for eleven years ,they kept the 6 months they didint round off ,I am living off that and was blessed to receive a discount on my insurance through Obamacare and received a credit that assisted me with my premimums.,I have been taking care of my mother for over 21 years or so and it has been a battle at times to overcome this disease and work and keep house,she is better now and me out of work is valid rest but bills still have to be paid.
I can relate to the way you are feeling. I wonder if my own depression plays a role in me isolating myself because of my lupus. Ive read years ago that depression comes along with lupus. I have to always stay positive mentally, hoping that it is going to help me physically. I use public transportation and have called my social life "the people on the bus stop or at my dr. appt's". Trying to maintain an upbeat attitude. Hobbies are a great idea until you are able to do more and or build new friendships. Life with lupus has it's ups and down's. So on the up side, life does get better. I hope things get better for you soon.:-)
Thank you so much for the reply I can always use love and compassion.
Ohhh wow, I can relate too you so much, here lately ive been feeling sooo alone. I have 4 kids so im really never alone…EVER!! LOL! I feel like some of my best friends dont get it…like they say ohhh my back hurt too, and im like you have nooo idea! I dont like too complain or seem whiney so I dont say much, so im getting more depressed because im keeping it all in…frustrating. I just feel like i get judged so much. My house is never clean enough, even tho I work graveyard n have a 4 n 6 year old too care for during the day so I dont get sleep and cleaning is the last thing on my list! Well sorry for venting all of this in your post! Thanx for reading it…I feel better now. :)
I couldn't agree with you more, wish my family understood this. This year I will be married 25 years, my husband thinks I don't care about it, my kids both in thier 30's are upset that we made no big plans, they live up north I'm in florida. I've explained it a million times, I don't make plans past a day or two, I can wake up feeling ok at 6am and by noon be miserable and completely fatigued all over again. My bad days far out number the good ones now, being that I am alone a great deal of the time, the only witness to whats really going on with me would be my little dog and he's not talking. I know some of there misunderstanding is my own fault as I keep the truth about how I'm really feeling from everyone, no one needs the extra worry and complaining as its been referred to many times never helps so I keep it to myself a kind of suffering in silence.