Anyone else living with this for 20+ years

Hello to all fellow lupies. I just joined this about a week ago and am glad to know I'm not alone. I've had lupus since 1988. What I've not seen are a lot of others with long term lupus. It got me to thinking there has got to be others. I joined this group hoping to find others in my boat, having lupus for along time, being home bound, lonely and isolated with a long list of medical problems because of lupus. I've lost a lot to lupus most people don't get it, or don't believe anyone can have this many medical problems I'm hoping to find others who also have lived with this as long as I have.

Welcome hopeful! I hope this site helps you to realize you are not alone. There are many of us struggling with what life has dealt us. I have had lupus for almost 15 years now, in addition to other odds and ends of autoimmune diseases. Because God forbid we should just have one thing to handle. Lol! I am one of the lucky (or maybe just stubborn) ones in that I still work full time. Most days I am not sure how, but I am managing. I have started looking for part time work now because things are just progressing faster now than in recent years and I am not as young as I used to be. I still have the mind set that I am going to hurt and feel lousy if I am home or out living my life. I was sorry to read that you are home bound. I can only imagine how hard that would be. I hope you find companionship and understanding here. This site has been a God-send to me. I no longer feel that I have to fight this alone. So, again, welcome!

Hello hopeful

I was diagnosed in 2010 i think I have had problems since i was a child. Arthritis and fibro. My doctor put me on meds but did not want to diagnose with lupus at first because of insurance and life insurance. Over the last year i have had more problems and dont leave the house much. When i went out on long term disability they listed all my medical problems it was sad to see how many i had i guess i just never relized how many their were. I look forward to getting to know you. I moderate on another site but i try and come here every couple of days

Lots of us are long timers I was diagnosed in 1967- so nearly half a century!! The list of diagnoses grows not only due to the ravages of the disease and medications to treat but also due to the aging process. At last count my list was 26 different diagnoses but I still feel fortunate as in spite of this illness I can still enjoy life

I was diagnosed 5 years ago- and am glad to know that it is possible to make it as far as you have! I empathize with you on the isolation and loneliness. It is hard to connect when you are so ill. You have come to the right place though, we all know where you are coming from .

Yep, 20 years in June. Long time. I have been permanently disabled from it that long also. In fact I got sick the same time OJ was being chased in his Bronco. That sure was a lifetime ago. I identify with everything you say. But we are still here!


Welcome! I, too, have lived with lupus for more than 20 years. My medical history is so long that doctors are sometimes blown away by it. Despite this, I work part time outside the home and this keeps me going although some days it is a struggle. Feel free to pick our brains any time - our group is a lifesaver.

thank you to all that have responded, I feel lucky to know there are more like me out there and my situation isn't really that uncommon. I will continue to check in and keep reading , just knowing there's a place I can come for support will help with the day to day struggle.

hopeful said:

thank you to all that have responded, I feel lucky to know there are more like me out there and my situation isn't really that uncommon. I will continue to check in and keep reading , just knowing there's a place I can come for support will help with the day to day struggle.

I have had lupus since I was 30 now I’m 55. My life has changed in many ways. After being on Plaquinil for years, this Dr I have now decided it would be in my best interet to stop that med and just treat all my symptoms as they arise. I now take 15 meds a day and depression is through the roof. I eat good and pretty healthy but my weight grew fast and has stayed there for at least 16 years. I try to enjoy myself and ride my Harley on good days but they are few and far between now. So my joy is watch grandchildren from my couch, where I’m more comfortable. I don’t want to accept that this is my life, but the Drs. Have said to slow down I’m putting to mush stress on my body. We’ll since I’m just venting I probably don’t make sense so I just stop now. Thanks for listening

hello hopeful.i joined this group a few months ago,and this is my first time I reply to a discussion.I was diagnose with lupus more than 20 years and just like you,I am at home lonely and isolated.and I also like you I've lost many things to lupus,house,money,"friends".and family.but I still have a way to manage and small art and craft business at home.I just ,came out from the hospital after my forth stroke and awaiting for and open hearth surgery.I also suffer of severe chronic pain like most of us from lupus,but from some growing tumors in my lumbar spine,I have "chf" and pulmonary hypertension and the list go on, joined this site have been and open door in to many ways lupus changes so many people's life just like my , now I know there are many of us struggling whit this, and we are not alone.

Welcome! I’ve been dealing with this disease for 37 years. Started when I was 7. So I have some experience…lol I hope you enjoy the group!

Diagnosed with lupus and 2006 it has been an awful ride. But when I read your other comments or the other comments I know I’m not alone and I know that there are others out there worse than me so I need to be thankful for for my good days and my lack of severity of my conditions. I have Cushing’s disease Hashimoto’s interstitial cystitis central nervous system neuropathy, lupus with vasculitis, gastric paresis, just to name a few conditions that I have.

I was diagnosed in 1981 but my Dr. thinks I was born with it, so 54 years. Then my Mom and siblings got tested, they have it too! My Mom is 81, and my Aunts and Uncle who all have auto-immune disease are close to 100. When I was 30 I went into a depression, thinking that I have to deal with the pain and isolation for 50+ more years, but then i learned to just take it 1 day or even 1 hour at a time.

Just wondering how many of us grew up with the disease? I can remember laying in bed reading as a kid because I was too tired to run around outside. I also never argued with my bedtime. Even in high school! I was out by 9:30…lol My friends thought I was crazy. My original dx was Sjogren’s so I was the kid with a water bottle on their desk and lemon drops. Other parents were like, why does she get a water bottle and mine doesn’t? Fortunately I went to a private school so it didn’t escalate from there. Haha

hello hopeful, I too have had to deal with the ravages of lupus since 1988, I was 11. I am 40 now and the list of diagnoses goes on and on for me as well. just out of the hospital after passing out once again. 2nd pulmonary embolism. can't take blood thinner because of my Crohn's disease. of course chronic pain. CHF since 2000 so no lupus meds for me. I too have lost my home, friends, family. very isolating to say the least. my depression is the worst it has ever been right now. I have been on a breathing machine 2 times since January and that is the scariest thing I have gone through so far. had to have my large intestine removed due to the crohn's so now it is impossible to keep my electrolytes in balance. just gets worse with age it seems. truly disgusted with life right now. but this group is great. you will never be alone in your fight.

Lone Wolf,

Your words are uplifting. Congratulations on your many endeavors to help others. I know this is a wonderful

outreach and by extending yourself it has been a powerful source of healing.

All best,


lone wolf said:

Hello Hopeful: I have lived with lupus since 1993 and had to re-invent myself many times over due to the illness. I was a practicing doc when I was DX. Once I left my practice to take care of myself, another world opened up for me. I have written books, lectured around the country on WHOLE PERSON WELLNESS, founded and operated 2 schools for the healing arts, and the list keeps going. Currently I am looking for avenues to talk to people about living well with lupus. The disease does not define me, it is simply something that is a part of my life. I feel fortunate to have the fortitude that I have, and I encourage others to find that kind of enthusiasm for what they can accomplish, rather than fall prey to the depression that arises from the things we have lost.

Be Well,

lone wolf

I am a fellow long-term survivor…35 years. The last 5 years have been the most difficult. I have not only slowed down, I have just about come to a complete stop. I always was active and refused to be defined by the disease. but now I am so weary of living with all the many ailments that have slowly eroded who I used to be. I should probably not be posting today as I have had an exceptionally bad week. I will bounce back shortly, but my bounces are becoming s little like a balloon whose air is leaking out. Sorry for
this pathetic post. Take care

Error…shouldn’t read 25 years