View Full Version : coping with the changes

04-04-2009, 07:58 PM
Hi there,
My wife was diagnosed over 4 years ago with Discoid Lupus. Over the past 4-6 months she started displaying SLE related symptoms. Although we knew that there was a possibility her Discoid could develop into SLE, we didn't "see" what was happening right in front of us (hindsight's 20/20, right?). Unfortunately, during this time we never connected the dots and realized what she was going through because we had never really focused on the SLE portions of our research. After visiting the doctor 2 weeks ago, he explained to her that he had mis-diagnosed her Discoid Lupus and that she has had SLE all along.

Physically, she has not been well since about mid-November. But aside from her numerous physical struggles during this time - increased fatigue and joint pain, steady headaches, abdominal pains, herpes simplex B breakouts on nose (4 times since Nov), constant spotting, zig-zagging sight - she has gone through quite a personality change.

While we have dealt with bouts of depression before, this has been quite different. She has seemingly turned her back on all those who love her except for our two beautiful daughters. Of the closest to her:
- Her parents, who she has always been extremely close with and have always supported her, are scared and confused with the lack of relationship/love between them. They contact me daily to find out how she is because she very rarely touches base with them anymore. When she does, the conversations are very one-sided and she is short and unfeeling with them.
- Her closest aunt and uncle, who are also her god-parents, have become a non-factor in her life. They have always been support figures in her life.
- She no longer pays attention to her sickly grand-mother who had always been a VIP in her life.
- And then myself, who faces weekly discussions with her of separation because she is "void of feelings" and "miserable, pretending to live a happily married life".

Some of our research discusses personality disorders and changes in disposition. Could all this be related?

04-05-2009, 03:16 AM
Hi canwerecover,

I'm Rob, and I was diagnosed with Systemic Lupus five years ago. I have undergone a drastic personality change that is oftentimes odd, and hard for others to understand. I was an extrovert, owned my own business, and I was very social and engaged with others. After my diagnosis I had to close my business, my fiancee whom I'd been with for six years left. My friends stopped coming around, and I was very much alone suddenly.

I'm now a very guarded introvert. I have a difficult time talking to people, and I live in a self imposed isolation. I don't answer the phone, I don't invite people to my home, and my family says I have become very distant, and the "sparkle" in my eye and spring in my step are gone.

Many times I don't talk to people because I have fairly severe Cognitive Dysfunction or (brain fog), as we call it. It causes me to forget words, forget entire trains of thought in the middle of a conversation, and I tend to repeat myself alot because I forget what I just talked about. The best way to explain it, is that I've lost the ability to articulate myself to others. I deal with depression on a regular basis.

Your wife could be experiencing some significant cognitive problems that are leading to her detachment and her turning her back on others. And, even without cognitive dysfunction, the constant pain and frustration of Lupus can leave a person with little or no energy. It grinds you down. There are no simple solutions for these problems. I try to interact with others as much as I can on my good days when my ability to communicate is at it's best. I also joined an online support group-this one. I talk to others here daily, and that helps me stay connected and open to interaction with others. I don't take any anti-depressants, but many people with Lupus do, and have good results.

Anyway, this is just one theory on what may be happening with your wife. I'm sure others will be along shortly with their thoughts and recommendations. Welcome to our group, and please make yourself at home.


sick n tired
04-05-2009, 07:44 AM
Hey canwerecover,

I am sorry that you and your wife are going through these problems.

I have had a change, also...she may have some Central nervous issues, also. Have you thought of seeing a neurologist? Have you told the Rheumy of what you are seeing? He needs to know the extreme change in her personality

Your wife might be having cognitive problems...I have some severe ones myself and I don't like and/or have a fear of being made the butt of the joke...

for instance, yesterday, I was talking to my mom on the phone...I was telling her something my son and his girlfriend were going to do for the upcoming wedding, but instead of saying my son's name I inserted my married brother's name. She asked me to repeat it 2 or 3 times and then told me that I was saying my brother's name. (it is very irritating when people know what you mean and still have to say something about it) She started laughing about it and said I was just like her 76 year old husband (possible alzheimers) and maybe we should hang together and forget together....I was very hurt and when that happens, I stop talking all together to her.

I am not saying your inlaws have done something like that, but fear of looking or sounding stupid might be the reason she is distant. I have gotten at times to where I just don't want to talk to anyone...The good thing is that you are supportive. Make a point of showing her this...I have times when I start to feel like my spouse doesn't love me because I perceive that he doesn't understand or believe me. I am being this transparent to give you a window into the mind of one of us....My husband loves me and does care, but I feel like I am sinking into an abyss of insecurity....

Perhaps your wife would benefit from going to a therapist...better yet, both of you....Please feel free to come here and vent or ask questions...

04-05-2009, 07:48 AM
Hi canwerecover -

What a struggle she must be going through now... Rob has articulated so well what many of us face, though no two of us are exactly alike. An initial diagnosis, plus the pain and fatigue can be so wearying that you don't want to face anyone.

Take a look at the "Laurie's Lounge" - there's a "book chat" going on about a book many of us are reading right now, written by a woman with a chronic condition. That book may help both you and your wife with some insights, and may also give you a starting point to talk with each other about what is going on.

Please also consider talking with her physician about your observations. Yes, this could relate to the lupus, it could also relate to the changes she's feeling in her life right now - and her fears for the future.

Many hugs, canwerecover, for you and your wife. I'm glad you've found our forum, please encourage her to join us as well!

04-05-2009, 10:30 AM
hi canwerecover,

i know you are carrying a very heavy burden on your shoulders....your wife has changed, has withdrawn and is not allowing anyone in, her parents depend on you for an explanation, and you can't fix any of it.

sometimes when i have been in a bad flare for several days, i just can't come up with the energy to think of words to say to people. i lie there and watch my phone ring....i can't think of words to say, and don't have the strength to think of words....so i don't answer.

after years of struggling,people not understanding, i finally explained to them that if i don't answer, just call back the next day and maybe i will feel better.. i make sure that they understand that i don't have a problem with them, i just don't feel like talking. i know they worry, but usually when they call back, i am better and answer the phone.

your wife is just learning of this disease, facing the reality of it, and probably dealing with a flare. it is very frightening when you first realize that word recall is a true victim of lupus.

i hope she will join us,,,,,this group is the reason that i am able to manage my disease and still have a life.

04-06-2009, 05:11 PM
Hi rob, sick n tired, hatlady and mountaindreamer,

I can only begin to imagine what you have experienced and truly thank you for your time. Your comments are very helpful for me to understand better what my wife could be going through. I do wish I had discovered this site sooner and could have better supported her late last year when it seems she started changing somewhat. I do truly love her and support her as much as I can, but she wants neither from me at this time.

I did discuss some of the comments from your posts with her, but she doesn't believe they apply to her. From her research and readings, she discovered similar information but believes it relates to people in severe and constant pain and experiencing related difficulties -- which is not her right now. Although she is fatigued, has joint pain, frequent headaches (her last one was 2-1/2 days long), and daily ab pains with steady discomfort, she is still able to carry on daily routines at work and socially and therefore doesn't believe any personality changes could be related. She has said that the troubled months that we experienced in our relationship are what changed her, not the sickness. Although a true possibility, my trouble with this is her family feels a similar disconnect and lack of feeling from her.

One of my biggest fears is that she will drive a wedge between herself and the people that love her before she really needs their support and love.

04-06-2009, 07:52 PM
hi canwerecover,

it is obvious the love that you have for your wife....so sorry that you two are going through this...lupus is a dengenerative disease, it will get worse...so, the symptoms that she does not have, she may have later. Or, she could go into remission (if she is lucky). it takes us a while to put our fingers on all of the ways that we are affected. for example, if there is central nervous system involvement, then our speech, attitude, all cognitive functions are changed....she may not realize this yet, or she may be in denial.

i know it is hard for you to withstand what is happening, but please keep coming here and we will try to help you. your wife is a lucky lady, and i too hope she doesn't drive wedges in her relationships. lupus is a lonely disease, and we need our team to walk this life.

04-06-2009, 09:55 PM

In answer to your moniker, indeed, yes you can...

Sometimes when our disease peaks in pain and fatigue we become shut ins..our world become so small. Us and our disease...it is in our every thought, every dream, every sleepless night...it consumes our thoughts, though we may not convey it verbally it clearly reveals itself in our actions or lacks of as you have seen in your wife.

For me, when I become a shut in, I feel within me...I have nothing to talk about, except me and the disease and I feel who wants to hear that. It is a chronic, nagging entity. Never seems to end, never a break...relentless...cripes I understand her totally.

She could seek counseling to find skills on how to cope with a chronic illness....or other tools, such as books, prescribed drugs, Lupus support group...online or in real times...use one or all...

Books that have been recommended...members recent finds...

I just ordered both...
The Chronic Illness Experience: Embracing the Imperfect Life
Living Well Emotionally: Break Through to a Life of Happiness

or reads which I do use...
The Tibetan Book of Living and Dying

Drugs as little as Deplin, non pharmaceutical type but requires a prescription can help with the fatigue, depression, concentration. I am currently on it...

What medicines are prescribed..They could also have side effects such as behavioral changes. I know they affect me..I withdraw, become dark in thought....depressed. Drugs such as pain pills, sleep aids....

How is her sleep...times with pain, depression is a result of restless sleep. Times just getting a few good nights of sleep can break the cycle, to help regain footing, to get ahead of the disease to manage it...

May she needs a drug regimen tweaking or changed..has her medication been evaluated? Taking any supplements, such as Fish Oils….avoiding inflammatory foods? Educating herself on the things to avoid, things to do….

I've been exactly where your wife has been...but you have to break it...sleep, drugs, stop the pain...otherwise it just goes into a vicious circle and Lupus feeds off of that stress. Plunging us further into its grip of pain and fatigue, anger too...

She has to find the strength to pull her out, seek help....

Personality disorders and depression from a life threatening chronic illness are two different things....

I don't blame her for being angry one bit, or short tempered, recluse, not that anyone warrants to be treated awfully, I understand......but she does need to find ways to get herself out of it...

She hates the disease and not people. I believe....

The disease can be managed; many of us are doing it every day. Today I am flare free; living with my norm, my aches, pains, stomach ache and etc…we all have our norm, which isn’t like your normal. If one would have asked me in February, how ya doing… I was in a cycle of madness, anger, isolation, frustration. The thunderous gray clouds open and out came the sunshine, me. While you’re in it, a flare, you think it will never end...It does, I’ve had many. And when I am not at my worst, I do enjoy my freedom. It may not be much to the average, but it is a life...worth living. Three years ago I would have said different…

In reply to your second post....

Also when there is trouble at home in our marriages...sick or not, some people do distant themselves from relatives, friends, their spouse..not wanting to talk about marriage woes. Causing avoidance..while others want to chat up about it....

Why don't you believe her when she said... the troubled months that we experienced in our relationship are what changed her, not the sickness. When you have Lupus... it is hard, at least for me when people doubt me, my words, my feelings because the only person that knows me, what I am feeling is me. When I am doubted about my feelings I get upset.

We get doubted about our illness all the time, by doctors, family and I wouldn't like a person, my husband or anyone to question or doubt what I feel.......maybe what she is saying is true. Incidents can change a relationship drastically...

Lupus isn't responsible for all of our woes....

Be well, keep well...

04-07-2009, 06:06 PM
Thank you, Oluwa, for your thoughts and information. I do truly believe in my wife and try to support and love her as best I can. I respect and honor how she feels both physically and emotionally. She is definitely going through a difficult time - be it related to the Lupus or not - and I am trying to better understand what plagues her in order to support her better.

04-08-2009, 10:24 AM
You're welcome Canwerecover...I thought so too, that you are supportive and love your wife, because you are here, reaching out, looking for answers for her health and spirit....


04-08-2009, 11:33 AM
Im so sorry Canwerecover. You have received GREAT information and support from the others,i mirror so MANY of their words. I have to tell you that i have been ill for 3 yrs now and it was HARD for my Whole family mostly in the beginning. Still is and always will be, but whats helped is my husband educated himself and is there at every turn i take and it has actually brought us CLOSER. I let him know every flare i have whether its BIG or small so he and my children know where moms at for that day,emotionally,mentally and physically. We dont dwell on it or focus on it but they can adjust there day to it as well with the understanding that its not them ,its my illness. There are days i can play games with them and days i cant. They KNOW why when i cant. I guess what im saying is your wife NEEDS to be HONEST with herself,you,family and friends from day to day. The ones who really care and UNDERSTAND will make changes themselves to better deal with it. HONESTY on a daily basis about ME and how i feel that day is whats worked BEST for me and the people in my life. Everyone around her needs to know the ins and outs of WHY she acts like she does and feels like she feels. Im not saying dwell on it, just Understand it. You are Great for being here to do just that. You and your wife are in my thoughts.
She also needs to realize, the More stressed she is the WORSE it will be for her,her symptoms and the people around her. Maybe she should cut back her hours at wrk? Go to therapy? Jump on this forum to relate to others? Both of you do whats IN your POWER to make it "OK". Its hard but its doable. Good Luck:angelic:

04-12-2009, 02:12 PM
I'm so touched by what you and your wife are going through. It gives me insight to what our families go though. I have gone through a lot of the things your wife is going through. And having the a lot of those problems now. I haven't been coming here long. This is very helpful to me to be able to read what others are going through. I have never been able to talk with other Lupus patient on a regular bases til now. Hope your wife can get to feeling better soon. I know its hard but you are doing the right thing by learning more about Lupus. Take Care!!!!