I'm never married and have no children. My family live out of state and out of the city. I have no help or encouragement when I'm sick and tired or having a flare. I have no one to go to the doctor with me or get infusions. I drive everywhere by myself even when I go to the hospital,or need to go grocery shopping. I am so weak sometimes I can't get out the bed. I have kidney disease stage 3 along with a lot of side illnesses and I'm worried about passing away as a lonely person. If I had it to do over again I believe I would have got married and had at least two kids and also more friends. I've been a lonely all my life. Anyone have any encouraging words for me? I think of death all the time.
Strangely enough, I can sympathize with you to a large degree. I never married either, though came close a couple of times. The difference is I have always had plenty of friends and great support. Over the last five years of my illness, I have had lots of friends come to visit and offer words of encouragement.
Still, I often feel all alone when dealing with the various symptoms of lupus and interstitial lung disease. After all, even the best of friends or family have their own lives to live, and they can't be there constantly to bring you up. Plus, some of them really don't care; they just pretend to for appearances sake.
Sometimes, when I am at my worst, I wonder if it would just be best to go ahead and die. But I want to live, and I will not give up on life. You shouldn't either. Find some interesting pasttimes that give you joy to occupy your time. Don't be embarrassed to talk to a mental health professional about depression. They can be a big help.
Above all, don't give up.
Thomas Franklin
I to am alone and single and have to deal with all the ups and downs that having 2 types of lupus has to offer. It's hard, really hard at times. I have 2 sons that live in an other state as does all the rest of my family. I do have many friends, but agree with Thomas that they have their own family's and issues to deal with. I know if I would call they would come and help if they could, but I don't like to bother any one, unless it's an absolute emergency.
I think of death and dying alone a lot too! I guess it's mostly due to getting older and dealing with the issues that lupus and other illnesses it brings. I believe in my heart we have turn all things over to God, and depend on him alone. I'm not here to give a sermon by any means, but prayer always helps me.
I started back to sewing and quilting, and I started going to sewing and quilting classes given at quilting shops and various fabric shops. Back last winter I was so lonely I was really just miserable, I went and got a puppy that has made such a difference in my life. She is so loving and so much company. Not everyone likes dogs but maybe a kitten. Pets make a big difference in your life and can be a great companion. I am also looking in my area for a lupus support group to attend.
I will keep you in my thoughts and prayers.
Thank you Nehanie for your encouraging words. I've tried the puppy, but I could not take care of him which made me sad because I love dogs. My dog became socially lonely as well. I could not walk him. I do go to church and today was about praying and reading the bible. The church also have church activities which I attend when I'm feeling good. I believe in God and his Son Jesus Christ and Him dying on the cross to cleanse me of my sins. I plan to make heaven my home.
There is one support group in my town that meets every 2nd Saturday. I will try that.
Nahanie said:
I to am alone and single and have to deal with all the ups and downs that having 2 types of lupus has to offer. It's hard, really hard at times. I have 2 sons that live in an other state as does all the rest of my family. I do have many friends, but agree with Thomas that they have their own family's and issues to deal with. I know if I would call they would come and help if they could, but I don't like to bother any one, unless it's an absolute emergency.
I think of death and dying alone a lot too! I guess it's mostly due to getting older and dealing with the issues that lupus and other illnesses it brings. I believe in my heart we have turn all things over to God, and depend on him alone. I'm not here to give a sermon by any means, but prayer always helps me.
I started back to sewing and quilting, and I started going to sewing and quilting classes given at quilting shops and various fabric shops. Back last winter I was so lonely I was really just miserable, I went and got a puppy that has made such a difference in my life. She is so loving and so much company. Not everyone likes dogs but maybe a kitten. Pets make a big difference in your life and can be a great companion. I am also looking in my area for a lupus support group to attend.
I will keep you in my thoughts and prayers.
What you shared sounds so much like my life so I really relate to what you said. I am not married and I have no kids (I want both of those things and I continue to hope and pray that it will still happen) but I have started to try online dating since I know people who have found "the one" through eHarmony. I was diagnosed with Lupus 4 years ago but I have been sick for 13 years. Since my diagnosis I have been living in Washington, DC where I have no family and no help when I am sick. Like you I drive myself to the hospital and anywhere else that I need to go no matter how sick I am.I get so weak and sick that I can't get out of bed. I had a falling out with my mom because she believes I can cure my Lupus with a vegan diet and exercise so a few years ago when I was very sick and unable to work so I had no income so she was supporting me financially. She used that to force me to give her permission to speak to my doctors as well as giving her power of attorney. She then told all my doctors that I was a drug addict, addicted to pain medication so they were not to give me treatment for my pain and told them that I was using my illness to get attention. I have never suffered both physically and emotionally as much as I did during that time. Long story short is that once my health improved and I was able to go back to work I cut my mom out and had her shred all documents giving her control over my life through power of attorney and permission to speak to my doctors. I then vowed to never let anyone have power over me so I have spent the past 4 years trying to deal with my health problems by myself. Like you I have been lonely and worry that I will always be alone and I also find myself thinking about death sometimes so you truly are not alone in having those thoughts and feelings. My encouraging words/advice/coping tips/etc. are things that I personally have found helpful consider seeing a therapist (if you don't already see one) because it is nice to have someone who is objective and is not operating from a place of fear/helplessness like family and friends do. It is also nice to have someone you see who is there solely to listen to you and help you work through all aspects of living with a chronic disease.I have found it helpful to try to keep a positive outlook on things and keep fighting to achieve my goals in life even though Lupus makes it harder to do that because If I give up on my goals then I will be giving up on life. So don't give up hope that you will get married and have kids. I have found that having support and people to talk to who understand or try to understand what you are going through is a huge help in my life. Being able to come to this site and talk with people who understand what you are going through really has helped a lot. I finally feel like I am not alone. Don't be afraid to ask for help. That is something I have been working on because I am the suffer in silence type and it wasn't till I had a few occasions where I was forced to ask for help that I realized my pride was getting in the way of help I really needed. Keep fighting, keep hope alive and don't let Lupus win the battle.
Similar situation here, I am a single Mom and have 3 grown children. Two of them live in other States and my third requires 24/7 care.
I moved from metro NJ to OK in 2002 to care for my Dad on Hospice. Now I am stuck here.
There is a special Medicaid Waiver which provides help if you have SSDI and Medicare. This is my saving grace. I have access to an aide 12 hrs. a week ( finding a good one is difficult), help with errands, meds and light housekeeping.
You might check this out in your State?
My Church helps out occasionally.
But I am basically alone and thinking of selling my car. It is 14 yrs. old.
I have SLE, DDD, APS, etc.
Eighteen mos. ago, I had a cat scan for my back and an aortic arch anyerism was discovered.
I do not have the funds to travel to Mayo or Duke for treatment.
We keep busy with hobbies, and crafts.
My Mom is close but she is in her late eighties.
I have one sibling but we are not close.
It can be isolating at times.
I will keep you in my thoughts. 
Is there any chance you could move to where your family are at? It is not nice to be completely on your own. Maybe you can find an interest in a hobbie and join a group so you have more of a social life while i understand a lot of days are hard for you but on the better days it would be lovely if you could get out and be doing something that you enjoy. I am now single after leaving my husband of 14 years he was never any support for me. I too had to take myself to hospital and appointments because he couldn't be bothered he had no empathy for me at all when i was sick. My family live a fair way from me too. I don't even tell a lot of people i know that i have Lupus because they just don't understand and what makes it worse even though i may feel absolutely awful i am always told that i look well. I really hope that you can improve your situation. Maybe ask your doctor about seeing someone to talk to about the way you are feeling. I was feeling quite depressed a couple of years ago because after being already diagnosed with Lupus, an under active thyroid, and going through menopause i was diagnosed with diabetes 2 and i was able to see a psychologist for 6 weeks free of charge. This helped me a lot I was prescribed anti-depressants but that was mostly for my menopause symptoms because of the anxiety i was feeling they help a lot i would never stop taking them as they make me feel so much better and i am able to cope with things a lot better. I hope things improve for you soon take care!
oh sweetie, god bless you , you are in my prayers, i know having lupus even with family and you can still feel alone, because it is so hard to explain, and make other people understand.....do you have a pet, a dog or kitty, are the most wonderful companions, and they love you unconditionally, kitties are alot easier to maintain,,,,a kitty could bring joy into your life.....and life is always worth living,, never give up dear.....and maybe you should see the doctor and get some anti depressants, i am severely depressed, and i take cymbalta, and lamactil, it really seems to help, please feel free to eme anytime and talk, i am ■■■■■■■■■■■■■■■■■■■■■■■.....and never give up, and you are not alone, the lord is always there with you.......god bless and please eme, we can talk about our lupus woes, and whatever else you want to vent about, because when you do that it tends to make a person feel better....god bless you....purrs..catspaw1955
Donna thank you for your reply. I only have Medicare but I will check on that aide. Like you I do have a brother but we don't speak. He want even visit me in the hospital. I know he has his own life but since he is the closes in location he should be a little bit more considerate. So I take care of myself the best I can. I have lupus with kidney disease stage 3 and I wonder who will I call on if I am unable to drive or the doctor say I can not drive.
Donna said:
Similar situation here, I am a single Mom and have 3 grown children. Two of them live in other States and my third requires 24/7 care.
I moved from metro NJ to OK in 2002 to care for my Dad on Hospice. Now I am stuck here.
There is a special Medicaid Waiver which provides help if you have SSDI and Medicare. This is my saving grace. I have access to an aide 12 hrs. a week ( finding a good one is difficult), help with errands, meds and light housekeeping.
You might check this out in your State?
My Church helps out occasionally.
But I am basically alone and thinking of selling my car. It is 14 yrs. old.
I have SLE, DDD, APS, etc.
Eighteen mos. ago, I had a cat scan for my back and an aortic arch anyerism was discovered.
I do not have the funds to travel to Mayo or Duke for treatment.
We keep busy with hobbies, and crafts.
My Mom is close but she is in her late eighties.
I have one sibling but we are not close.
It can be isolating at times.
I will keep you in my thoughts. :-)
Alone here too and sometimes it is scary when you get really sick .I also don't have family- since all except one brother has already died and the brother is 1500 miles away But one difference I have is that I am very independent and really never had a desire for someone to accompany me to my doctor's appts etc. If for some reason I would not be able to drive I would then hitch a ride with a friend or call a cab but if I am able to wash and dress myself I should be able to drive IMO Was married once and not something to repeat- there are worse things than being alone and a bad marriage is one of them With lupus many of us find that friends drift away since we often don't feel well enough for a lot of social activities- seems to be one of the prices we pay. Having a pet of some kind helps a lot with the loneliness - puppies are a lot of work but an adult lap dog doesn't need much exercise and can be endless joy and company Cats can also make good pets and even birds can help ease the loneliness. Always a struggle but you have to not let this illness win
I don't think you should feel that way--that everything is gone. Nothing is gone gone, you still have you and you can make friends. Please don't feel so low and depressed. I know this disease can be really overwhelming. What seems to be so impossible now but hang in there and it will get better.
Have you read how you can program your mind to heal you? I am not saying you should stop taking any treatment but if you start programming to think positive along with your treatment, it will be very effective. I have read this book by Jose Silva and it has helped me go through life when my daughter was diagnosed and struggling with this disease. I do the meditation and use the methods that they explain so I can be of help and support my daughter as she is going through all her struggles.
Please do not think about death--you should be alive and enjoy your life.
Avanch thank you for your encouraging words. I'm getting help for my depression but they decreased my meds because I take a lot of other meds for Lupus and various different illnesses. Every since then I have been depressed and thinking about death. I am bipolar. I think it's great that your daughter has you to support her. My mother and oldest brother(who helped raised me) died 3 yrs ago.
avanch said:
I don't think you should feel that way--that everything is gone. Nothing is gone gone, you still have you and you can make friends. Please don't feel so low and depressed. I know this disease can be really overwhelming. What seems to be so impossible now but hang in there and it will get better.
Have you read how you can program your mind to heal you? I am not saying you should stop taking any treatment but if you start programming to think positive along with your treatment, it will be very effective. I have read this book by Jose Silva and it has helped me go through life when my daughter was diagnosed and struggling with this disease. I do the meditation and use the methods that they explain so I can be of help and support my daughter as she is going through all her struggles.
Please do not think about death--you should be alive and enjoy your life.
Thank you Thomas for your encouraging words. I've always been independent and a loner and now that I'm 53 I have no one around while I go through this difficult time. That's why I've decided to join a support group online and in my town. I'm bipolar but haven't had an episode in a long time, meanwhile my doctor has decrease my meds because I am already on a lot of meds for my Lupus and kidney disease and I' also a diabetic along with a host of other problems. Good luck with you and your illness,
Thomas Franklin said:
Strangely enough, I can sympathize with you to a large degree. I never married either, though came close a couple of times. The difference is I have always had plenty of friends and great support. Over the last five years of my illness, I have had lots of friends come to visit and offer words of encouragement.
Still, I often feel all alone when dealing with the various symptoms of lupus and interstitial lung disease. After all, even the best of friends or family have their own lives to live, and they can't be there constantly to bring you up. Plus, some of them really don't care; they just pretend to for appearances sake.
Sometimes, when I am at my worst, I wonder if it would just be best to go ahead and die. But I want to live, and I will not give up on life. You shouldn't either. Find some interesting pasttimes that give you joy to occupy your time. Don't be embarrassed to talk to a mental health professional about depression. They can be a big help.
Above all, don't give up.
Thomas Franklin
GVicky thank you for your reply and encouraging words. I have been on the dating sites too but I don't get many replys. the replys I do get want to move in or have a casual relationship and I want do that because I have God in my life. I don't consider myself an unattractive person, I just have the moon face and a few extra pounds I post an up to date pic often to show that I am losing some weight and I have a neck.. I keep trying though. God Bless you.
GVicky said:
Hi there,
After reading your post and all the replies I just had to tell you that there is always hope! I can attest to God's grace and love. I was feeling the same exact way last year. I was depressed and I certainly got help for it - a therapist or counselor is vital and sometimes medication is necessary too at least for a while. Last year, I had no boyfriend, had been single for quite a long time, no children from first marriage, brothers have their own lives and I am not close to them at all. Friends drifted away as I kept declining invites. What little energy I have is for the basics. Mom lives close but she is 68, husband is mostly in Canada so she needs my help all the time which I gladly give but it is draining since I have trouble looking after myself and my own home. I had been on and off dating sites and just kept disabling my account because I never even got close to meeting someone. Like you, I had dogs but had to surrender them because I could not care for them...plus they took off on me and attacked my neighbor. :/ I've always been independent but I felt this void. Last October I had a long heart to heart with God. I did not want to jump into marriage but I could not stand the loneliness. I don't usually cry but that night I cried so hard, from deep within my soul. Still, I was not going to jump into a relationship just to not be lonely. I had been in a bad marriage which I totally agree is truly worse than being alone. I just asked for a partner, a companion, a man who would stand by me. I told God that I would try again but this time will take it really slow and will Trust in Him that He will create the circumstances to bring us together. I focused on making sure I was ready for that man when the time came. I met someone shortly after through a dating site. I took it slow and got to know him via email messages then phone conversations and then we met. Still, there are times I feel misunderstood but I rather they never understand , that they never experience anything remotely like this. I am very grateful for lifewithlupus because this has been the only place where I feel safe discussing what I really feel.
Please do not give up. In the meantime, while you wait, truly love and honor yourself. Try to see yourself as God sees you. Focus on doing things you always wanted to do. Learn new things. If you are truly depressed talk to your doctor about it. Citalopram is what I have been taking and it has helped tremendously. I hope you start feeling better too and hope you meet someone and things start looking up!
I am so sorry about your mother and brother. I will keep you in my prayers but please dont lose heart. Take strength in the positive things that happen however few they are --even if it takes a magnifying glass to find them--as you keep focusing in the positive things, the whole thing will change. I am not saying it is easy when you are going through so much but you have to keep trying. Though I am not going through the disease myself, I see my daughter day in and day out struggling --every minute. But I am telling her the same thing I am telling you. You should not allow lupus to win.
I will keep praying--hang in there.
Avanch, thank you. I feel the courage to hang in there because of people like you and this site.
avanch said:
I am so sorry about your mother and brother. I will keep you in my prayers but please dont lose heart. Take strength in the positive things that happen however few they are --even if it takes a magnifying glass to find them--as you keep focusing in the positive things, the whole thing will change. I am not saying it is easy when you are going through so much but you have to keep trying. Though I am not going through the disease myself, I see my daughter day in and day out struggling --every minute. But I am telling her the same thing I am telling you. You should not allow lupus to win.
I will keep praying--hang in there.
I can totally relate to your story, I am on my own well not quite I have my dog Gypsy and two cats who are my family and without them I can honestly say I wouldn't be here, I have no friends they all got fed up over the years and never truly believed I was really ill and that goes for most of my family. If ever you want to chat please drop me a line or anyone else who is in the same position maybe we can all be a support for each other. Sending hugs xx
Jupet thank you for your response. I tried pets but I could not take care of them. I'm new so I'm not sure how to add you as a friend but I'll try because you are right we can support each other along with any one else who want to become our friend. God Bless you during your healing..
jupet said:
I can totally relate to your story, I am on my own well not quite I have my dog Gypsy and two cats who are my family and without them I can honestly say I wouldn't be here, I have no friends they all got fed up over the years and never truly believed I was really ill and that goes for most of my family. If ever you want to chat please drop me a line or anyone else who is in the same position maybe we can all be a support for each other. Sending hugs xx
LupusRRJ: I'm so sorry to hear your despair. You said that you are on meds for you being bipolar, maybe you need your meds changed. Sometimes the meds themselves can be the problem. See about that. Maybe you can 'ask' for some help from your church 'family'. There have been many suggestions here....hopefully you will be able to check into some of them. Never loose the sight of tomorrow..............Find something bright in everyday. Good luck, and feel better.
Awe thank you for replying. I had the same problem too with them just wanting one thing or to take advantage of free home and food. I agree ilwith staying single as opposed to being in bad company. The beauty of it is that there is no age for love so there is plenty of time for you. I just hope you get the care you need and start enjoying life and meeting people again. I almost gave up last year, but had I done so it would remove all hope. Of all th Ings we have lost to these illnesses, that is the only thing it cannot take away feom us!