Page 1 of 3 123 LastLast
Results 1 to 10 of 26

Thread: Need to Talk About Isolation

  1. #1
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default Need to Talk About Isolation

    Hello all,

    My name is Rob, and I was diagnosed with SLE in 2004. I'd like to share with you something that happened to me, and that I have never talked about with anyone.
    I was 36 when I found out I have Lupus. I was a happy, newly successful small business owner, and I was engaged to my girlfriend of 6 years, her name was Lynn. We were really happy together, and after having gone through a divorce in my mid 20's, I thought I had finally found the right lady. Well, after the diagnosis, things changed. Her parents, whom I'd always gotten along with, and liked very much, suddenly could not find the time to talk to me, and I was no longer invited to family get togethers. So I sat down with Lynn, and asked her what the heck was wrong with them. She said that I was what was wrong. They said that Lupus was just some B.S. disease that lazy people use to mooch off the people around them. She said she knew Lupus was real, and that she wanted to cancel our upcoming wedding, and break up with me. To say I was shocked would be an understatement. In desperation, I got out her wedding ring that had just been made, and showed it to her. I told her I will survive Lupus, and we have a very bright future ahead of us. She said - "How can I have a future with some guy that's just going to be dead in a couple of years".
    That was the worst thing anyone has ever said to me. I loved her with all my heart, always encouraged her when she was down, always told her she was the kindest, most beautiful woman I had ever known. So, fast forward a couple of years, I sold my business and house, moved back to my childhood home in Maine, am on full disability, and do my best to manage my disease. But something has has caused profound changes in my personality. I was an extrovert, confident. I did alot of public speaking, and was very active and engaged with my friends, and the community. Now, I don't communicate with anyone, I'm actually afraid to answer the phone. I reject all efforts of people around me to go places, do things, or meet people. I rarely leave the house. I can't look people in the eye anymore. I was a fit, decent looking guy, and now I don't care what I look like. I keep my shades down and don't answer the door when somebody shows up.
    I had seemingly endless reserves of confidence, and loved being around people. I wish, I hope, that I can get back even just a little bit of that. Has anyone here experienced this urgent need for isolation? And if so, how do you deal with it?

    Thanks for letting me bend your ear for a bit,

    Rob

  2. #2
    Join Date
    Mar 2007
    Location
    new orleans, la
    Posts
    55
    Thanks
    22
    Thanked 1 Time in 1 Post

    Default

    I think I know how you feel but I don't quite know if I help. Since my diagnosis of SLE last January, I have made no attempts at making new friends. I actually avoid talking to old friends especially those who don't know about the diagnosis. I used to be really extroverted but now I really avoid going to places where I might run into somebody I know.
    I've started going to therapy and she has helped me alot with recognizing that I am going through stages of grief about having lupus and how it has changed how I view myself and my future and how that has changed the way I relate to people.
    I'm still trying to figure it out too but I'll stick around and tell you if I have any breakthroughs.

  3. #3
    Join Date
    May 2007
    Location
    Seattle, Washington, USA
    Posts
    2,998
    Thanks
    256
    Thanked 146 Times in 77 Posts

    Default

    Hi Rob,

    Wow, that was raw. I felt her words and they stung. I can only begin to imagine what it truly felt like to you. I am sorry. Some people, as I shake my head. I will reserve my opinion...

    I am sorry Rob, you didn't deserve that nor does anyone from any person, lover, friend, family and etc...

    Living in isolation. I call it being noncommited to me, to my life. Sometimes it seems easier to become a recluse. I have to ask who do we make it easier for? In reality it is harder on us. Loneliness is death of a spirit. A death of our self concept...such as you seem to be experiencing. Impaired self concept, lacking your confidence. Rob, it is in there...you don't have to hope or wish, you just have to find you again.

    Are of you of faith, Sunday church could be a start to open the door to yourself you had closed.

    Have you dropped your grooming to the minumum? Start with a shave and new haircut perhaps?

    Get ready for the day when rising, shower, clean clothes...walk the eighborhood blocks, drive to the pet store? A dog to walk perhaps for company is a start to greet people and to say Hi, how's it going....

    Open one blind at a time...

    Call someone who cares but you shut out...Say, hey I am ready for the...movie, the burger, the..you fill in the blank...

    Are you on anti-depressants?

    Are you ashamed that you have Lupus? Do you think you are not worthy anymore? Just thoughts to ponder, to find out why you pulled into the tortoise shell....How long has it been since you crawled in?

    Me, I reach out, I call family when I feel like I've secluded myself too long. I have been known to hide out for a month without venturing off my porch. Me, afraid of the sun, afraid to exercise, afraid to cause a FLAIR, afraid to incite more pain, afraid I am too fat, always waiting for tomorrow as if I don't have a disease, as if it was a cold...thinking when I get well I will do, this and this and that. Maybe this is as good as it will get. Ah, many things that keeps me under the shell...

    Reality, we have a disease(s). It is what it is. Life doesn't happened to anyone, sick or not, we have to make it happen...Make it happen for you Rob. Keep the human contact...Cyberspace is wonderful, but we have to know it can't be our only contact with the world. We need to hear real laughs, touch an arm while talking, see the color of ones eyes, watching the pupils dilate with excitement...

    I can give you more ideas, but do tell what you use to like or what you want to try..maybe I can give you the push, or perhaps a shove in the right direction...

    Bend our ear, we don't mind...
    Hoping you will take on the day tomorrow.
    Hugs,
    Oluwa
    I have Lupus. So *^#@! what.

  4. #4
    Join Date
    Sep 2006
    Location
    Minnesota
    Posts
    1,368
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Rob, I can't tell you how sorry I am that you were treated so poorly by someone who meant so much to you. Cruel...unnecessary...

    I'm not sure what kind of support you have where you live. I have a local support group here, and it's become so incredibly important to me Everyone in my group has experienced the isolation of this disease at one time or another. It's so easy to just withdraw. I understand how you feel. I'm still working part time, but even at work it's simplest just to keep to myself. I don't want to talk about my illness...no one really 'gets it.' I can't do what I used to do and I don't see those I used to see. But, it's important to keep connected. A support group can help you do that. Oluwa had other great suggestions. Don't sell yourself short, Rob. You have worth as a person and will find those out there who will understand. Until then, we're here for you.

    Jody
    "If you trust Google more than you trust your doctor than maybe it's time to switch doctors."

  5. #5
    Join Date
    Dec 2007
    Posts
    10
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Rob,

    My heart goes out to you. Your story brought tears to my eyes, i think you're so strong for being able to come out of a situation like that. Absolutely no one deserves to go through what you went through. I cannot even fathom how much that could hurt. You are a wonderful person and deserve so much better in life. Having lupus is bad enough, you shouldn't have to go through what you did. There is support out there, and you deserve to find it, whether it be in here, or among your friends.

    It's easy to push away those around us. I do it cause i feel that they can't understand. They don't know what i'm going through, how could they even begin to sympathize? There are times where i force myself to go out, and by the end of the night, i'm glad i did. it's just making that initial step out, thats so difficult. I feel you have the strength inside you to do such.

    Wishing you the very best, and hope you find what you need and truly deserve,

    Alanah

  6. #6
    Join Date
    Feb 2008
    Location
    Oregon
    Posts
    61
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Hi Rob,

    I too want to say how sorry I am you had to go through that...the only positive I see is that you found out what kind of person she was before you were married. You do deserve to have someone who will love you, no matter what! I know there are good people out there who can "deal", my husband is one of them, so keep the faith, you'll find someone wonderful!

    My opinion; I think you are very depressed, I know this kind of depression. I went through this, not with my diagnosis of Lupus, but after several miscarriages. I turned the phone off, pulled the curtains shut and stayed in bed for days. The thing that got me back on my feet was my mother. She can really drive me nuts but she would just show up in the middle of the day, turn the ringer on, open all the windows and if she had to, DRAG me out of bed! I was furious, all I wanted to do was stay in my "cave" and be left alone but she just kept saying, "this isn't normal, get up and live your life!" With this disease it can be hard to get up and get moving (I know this too) but just try to do a little at a time, when you feel up to it, just baby steps.

    Someone else mentioned faith, I am one of Jehovah's Witnesses and if you'd like I can arrange for someone to meet you at your home, on your schedule to do a free home Bible study, if you'd like. Even if you would just like someone to talk to, we are always happy to help however we can. I'm not "pushing" anything on you and if you already have a faith or if you can find a support group in your area I think that would do wonders for you. Maybe even a hobby, anything to get you in contact with other people is a positive step.

    Don't get me wrong, I have days when I still hide in my cave but I also recognize that I need to be part of society for my own sake. My faith is what sustains me, if gives me a joy that no disease or person can take away, it also gives me hope for the future and I am so looking forward to it!

    I really hope that you can find your way to be happy again, like I said, just small steps, you'll get there!

    My offer to send one of Jehovah's Witnesses your way is sincere, if you think this is somthing you'd like to do please let me know, I'd be happy to help.

    onpointe
    "We are the music makers and we are the dreamers of a dream." Willy Wonka

  7. #7
    Join Date
    Jan 2008
    Location
    Oklahoma, USA
    Posts
    347
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Rob -

    I am a firm believer in the "all things happen for a reason" philosophy. Some people call that kind of thinking "crazy." I tend to think it helps me keep my sanity. In your case, I truly believe the "big guy upstairs," the "powers that be" or whatever or whomever you believe in, was looking out for you. Although what you have gone through has been extraordinarily painful, you are truly blessed. This woman and her family were exposed for who they really are. Thank Goodness you saw their true essence before you married into the family. Learning to live with lupus is a process that must begin inside you. In order to find the love and support you seek, you must be willing to step out and seek it. I am proud of you for finding the courage to join this forum.

    If you were an excellent public speaker and businessperson, confident and successful, then you still are. Don't let lupus define you. If you are having a bad day, honor that and rest and take care of yourself. When you feel better, take care of yourself by grabbing hold of the life you now have. Do something with it. Don't focus on what was. You deserve better. Seek and you shall find.

    I wish you health and happiness today and every day.

    Jana

  8. #8
    Join Date
    Dec 2007
    Posts
    72
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Wow, I don't even know what to say. I can't believe some people can be so heartless! Consider yourself lucky for getting away from those people. You deserve better!!!

    But that is a horrible experience to go through, and it is understandable that you are depressed. Like others said, just try to take things one day at a time. You don't have to stop living because of lupus!! You just have to make some changes, that's all!

    Best of luck to you, and please keep posting...I'm sure it will make you feel better.

  9. #9
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    Thank you all so much for your responses , and for caring. The logical side of me knows I am much better off without her, but the emotional side hasn't caught up with the logic yet. I've read all your responses multiple times, and I'll try to answer some of your questions. As far as Religion is concerned, I'm an agnostic. I was raised Methodist, but I find that I honestly don't believe in any sort of religious faith. I have wanted to believe many, many times, but it's just not there. Depression. I've been diagnosed with depression on more than one occasion. I know I am suffering with depression now. I think a psychologist or councelor could help me, but my self-imposed isolation has kept me from seeing anyone. My first step is talking here, maybe a councelor could be the 2nd step. Some good things I have going are my pets. I have three cats, and they bring me much happiness. I also have no lack of hobbies. Many people would say I have too many hobbies, oh well. The best thing I have working in my favor is my location. I moved back to my small hometown in Maine after having lived 20 years out west. It's familiar, safe territory, and I'm only a few miles from my parents, and my two sisters. I really want to open up to my family, but I don't know how. There are many people still here who I grew up with, and I want very much to re-connect with some old high-school friends. I have to stop hiding. Thank you all again for your responses, and support. I feel comfortable talking here, so I guess thats a positive 1st step.

    Rob

  10. #10
    Join Date
    Aug 2002
    Location
    NY NY USA
    Posts
    267
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    8)
    HEY ROB,
    BEING A GUY WE NEVER EXPECT THAT LUPUS WOULD GET TO US ......
    LIKE MOST GUYS I TOO THOUGHT THAT LUPUS WAS A FEMALE DISEASE TILL I GOT BOTH SLE AND DISCOID LUPUS.

    IT SOUNDS LIKE YOUR GIRL SPOKE WHEN SHE TOO WAS IN SHOCK FROM YOUR DIAGNOSIS...AS YOU WERE TOO.

    I KNOW IT MUST HAVE HURT BUT..... THAT MAY BE HER WAY OF COVERING UP HER FEELINGS AND HER PAIN AS WELL !!!!

    MAYBE YOU SHOULD HAVE HER COME TO THE SITE AND SEE THAT LUPUS IS NOT A DEATH SENTENCE.

    ACTUALLY SOME DO NOT EVEN ENJOY THERE LIVES HALF AS MUCH AS THEY DO TILL AFTER THEY ARE DIAGNOSED.....
    IT TAKES SOME TO GET SOMETHING AS POTENTIALLY FATAL AS LUPUS TO REALISE THAT THERE LIFE IS A GOOD ONE AND THAT THEY DO APPRECIATE WHAT THEY HAVE.

    SO SINCE SHE IS THE LOVE OF YOUR LIFE.....
    I AM SURE HER REPLY WAS SHOCKING TO YOU AND I AM POSOTIVE IT HURT....
    BUT IF SHE LOVES YOU I AM ALSO SURE SHE DID NOT MEAN TO HURT YOU PURPOSELY....do you???

    SO WHY NOT TAKE THIS WOMAN AND SIT HER DOWN AND FIRST EXPLAIN THAT YOU TOO ARE SCARED AND THAT YOU NEED HER ON YOUR SIDE MORE THAN EVER AT THIS TIME.

    THAN EDUCATE HER ABOUT LUPUS AS I AM SURE THAT YOU AND HER KNOW NOTHING ABOUT IT AT THIS POINT AND YOUR HEADS ARE FILLED WITH A TON OF USELESS KNOWLEDGE AND YOU HAVE HEARD A MILLION HORROR STORIES.

    SO TAKE HER WITH YOU TO THE DOCTORS AND BOTH OF YOU SHOULD ASK ANY QUESTIONS YOU MAY HAVE ABOUT WHAT TYPE OF LUPUS YOU HAVE, GET EVERYTHING OUT IN THE OPEN.....
    LET HER HEAR WHAT YOU WILL BE DEALING WITH AND ARE DEALING WITH KNOWING THAT YOU MAY OR MAY NOT HAVE A POTENTIAL FATAL DISEASE.

    BUT BEFORE YOU AND SHE JUMPS TO ANY CONCLUSIONS REMEMBER THAT IT IS POTENTIALLY FATAL ...
    FATALITY IS NOT THE VERY END NOR IS IT IN EVERYBODY'S NEAR FUTURE WHO HAS LUPUS.

    MOST PEOPLE WHO DO PASS FOM LUPUS PASS FROM COMPLICATION'S DUE TO LUPUS TREATMENT'S OR BY NOT TREATING THE DISEASE AT ALL.

    BUT THERE ARE THOSE WHO DO PASS FROM IT......
    BUT YOU ARE IN NO WAY GIVEN A DEATH SENTENCE BY HAVING THIS TERRIBLE DISEASE.

    I AM LIVING PROOF THAT YOU CAN HAVE LUPUS AND HAVE IT BE COMPLICATED WITH A MYRIAD OF OTHER AUTO-IMMUNE PROBLEMS AND STILL LIVE MANY GOOD YEARS.
    PLUS I AM DISABLD WITH PHYSICAL PROBLEMS IN MY SPINE AS WELL.

    PLEASE READ MY POST BELOW THAT IS TITLED I AM BACK AND STILL ALIVE.
    I HAVE HAD BOTH FORMS OF LUPUS NOW SINCE THE 80'S AND HAVE GOOD YEARS AND BAD ONES.....
    BUT FOR THE MOST PART THEY HAVE BEEN OK !!!

    SO RATHER THAN DEAL WITH WHAT YOUR GIRLFRIEND SAID AT FIRST AND LET IT BRING YOU DOWN ......
    WHY NOT SIT HER DOWN AND EXPLAIN WHAT IS THE REAL DEAL WITH THIS DISEASE.

    FIND OUT WHAT YOUR TREATMENT WILL BE , EXPLAIN IT TO HER, TELL HER HOW MUCH SHE IS PART OF YOUR FUTURE, TELL HER HOW MUCH SHE MEANS TO YOU AND THEN TELL HER HOW HER FIRST RE-ACTION HURT YOU AND HARD.

    I AM SURE YOU WILL GET A DIFFERENCE RESPONSE THAN YOU GOT AT FIRST.....
    HAVING WORKED AS A COUNSELOR I MUST TELL YOU THAT PEOPLE'S MINDS ARE BUILT TO KEEP THEM FROM PAIN AND WHAT YOU MAY HAVE HEARD WAS HER MIND PROTECTING HER FROM ANY EMOTIONAL PAIN.

    I FIND IT HARD TO BELIEVE THAT A WOMAN WHO WAS TO BE YOUR WIFE COULD BE THAT IN-SENSITIVE AND WOULD SAY SOMETHING LIKE THAT KNOWING IT WILL HURT YOU DEEPLY AND MAY EVEN BREAK YOUR HEART AND END YOUR RELATIONSHIP.

    I TEND TO THINK HER RESPONSE WAS YES FOOT IN MOUTH BUT WAS ALSO RIGHT OUT OF HER HEAD WITHOUT THINKING.....
    SHE TOO IS SCARED AND WHAT YOU ARE BOTH SCARED OF MOSTLY IS THE FEAR OF THE UNKNOWN !!!!!

    KNOWLEDGE HERE WOULD BE A HUGE HELP AND WOULD PROBALY PUT A LOT OF THINKING TO REST AND HAVE BOTH OF YOU REPLY ON FACTS AND RATHER THAN GETTING YOURSELVES UPSET OVER STORIES, RUMOR AND WHAT YA HEAR FROM THOSE WHO KNOW NOTHING ABOUT THIS DISEASE.

    THIS IS A HARD TIME FOR BOTH OF YOU.....AND EVEN THOUGH YOU SEEMED TO TAKE THE NEWS BETTER THAN YOUR GIRL...
    I AM SURE IT HIT YOU LIKE A TRUCK AND YOU WERE LOOKING FOR SOME SUPPORT ...right???

    LOVE IS STRONG AND STRONGER THAN RUMOR OR HERE SAY......
    WHAT IS MAINLY NEEDED HERE IS COMMINICATION BETWEEN YOU AND YOUR WOMAN !!!!

    MAYBE BOTH OF YOU GOING TO A THERAPIST.....
    IT WILL BE HELPFULL IN UNDERSTANDING YOUR DISEASE AND DEALING WITH ALL YOU WILL GO THROUGH AND HELP YOU TO UNDERSTAND WHY SHE RE-ACTED LIKE THAT AND HOW TO GET HER TO SEE YOU ARE NOT DYING AND HAVE A LONG LIFE AHEAD OF YOU...

    IT'S AN UP-HILL FIGHT WHEN YOU HAVE ANY CONJOINED TISSUE DISEASE AND THERE WILL BE GOOD AND BAD DAYS BUT A LOT OF WHAT KIND OF DAYS THEY WILL BE IS UP TO YOU AND HOW YOU APPROACH THIS DISEASE.

    IF YOU GO INTO THIS THINKING YOU ARE GOING TO DIE YOU ARE ALREADY GIVING UP BEFORE YOU EVEN KNOW THE EXTENT OF YOUR DISEASE.
    YOU MAY LIVE FOR YEARS BEFORE YOU EVEN START TO FEEL THE EFFECTS OF HAVING IT.
    YOU CAN BE OF GREAT HELP TO YOURSELF AND YOUR DOC BY TAKING VERY GOOD CARE OF YOURSELF AND BY THAT I MEAN PHYSICALLY MENTALLY AND SPIRITUALLY.

    SO RATHER THAN DWEEL ON THE NEGATIVE AND I KNOW WHAT SHE SAID HURT...BUT I AM ALSO SURE THAT IF IN FACT SHE TRUELY LOVES YOU AS YOU SAY...
    SHE IS NOW HURTING FOR HOW SHE REPLIED TO YOUR TELLING HER
    THAT YOU IN FACT HAD LUPUS !!!!

    LET'S NOT TAKE THE FOCUS OFF YOUR NEWLY DIAGNOSED DISEASE AND PUT IT ELSEWHERE...
    LET'S KEEP THE FOCUS WHERE IT MUST BE ON YOUR LUPUS, AND THE REST WILL FALL INTO PLACE.

    NEVER UNDER-ESTIMATE THE POWEROF A STRONG MIND AND THAT OF LOVE !!!!!

    FEEL FREE TO PM ME. LEAVE A NUMBER AND I WILL CALL YOU, LEAVE A MESSAGE FOR ME AND I WILL ANSWER IT.

    YOU ARE NOT ALONE MY FRIEND....FAR FROM IT !!!!

    ALL WILL WORK OUT....
    ALL YA NEED IS LOVE, COMMUNICATION, HONESTY AND A BELIEF IN YOURSELF !!!!!

    HOPE TO HEAR GOOD THINGS FROM YA SOON ROB...

    STJAMES13 8)
    MY GOAL IN LIFE IS TO BE AS GOOD A PERSON AS MY DOG ALREADY THINKS I AM.....

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •