First, I am truly sorry you have to go through dealing w/ fibro and lupus.

As for if you should share, take your time to get used to the diagnosis yourself. The local library is your friend in helping to understand what this illness could mean for you.

There is no time frame for when or if you have to let others in to this part of your life. If you do want to share, start with the people who have been the most understanding and supportive of your other chronic illness.

A strong support system and having others to confide in is important. Luckily through the internet and support groups like this you can receive that support and keep your anonymity if that is what you wish.

Good luck and I wish you the best in your decision no matter what it may be.

I too am sorry you now have a new diagnosis to deal with.

I had a huge wake up call with friends and family when I revealed the FM diagnosis. First when the doctor told me what was wrong I had never heard of it and had no idea that most everyone thought it was a mental disorder. I couldn't understand the odd reactions and the whispering...

If I had a do over I would never tell anyone.

Hi I am so sorry you have two illnesses to deal with now. You are definitely in the right place for support. I completely agree with Punky about having no worries about telling anyone in the family if you are not ready. Getting to know and understanding about these illnesses is first and foremost. You taking care of you is what is the most important thing right now. Hugs to you : )

You have a right to as much privacy as you choose. There is no obligation to share your diagnosis with anyone, ever, unless you believe it's in your best interests.

You deal with a lot - take your time, learn what you feel you need to know, and get to a place of acceptance with your diagnosis - then maybe you will want to share with a few trusted friends and/or family members. And then again maybe not.

My closest friends aren't people I feel I can talk to about this, as they are the type that will want to "fix" it. They are aware of it, but we don't discuss it. My second closest friends are in my fibro support group, and they are the ones I share my fibromyalgia issues with. If you have a local support group I highly recommend it as a place to feel safe talking about your diagnosis and your feelings about it.

Don't hold it in. Those that love you want to be there to support you. It is not good for your health and well being to keep something like this from others. You don't need to shoulder the burden alone. They will understand, be able to handle it and be there for you. If not, they were never truly there for you from the start.
big hug

Let yourself decide how you're dealign wtih this double whammy, then you can tell or not tell as you wish:-) We're here for you, and when you're ready, hopefully your nearest and dearest will be too.
Gentle hugs,
Leo

You don't have to share if you don't wish. But, I am totally with Maika on this.

Part of coming to terms is talking. Talking helps. Look at the number of psychologists and psychiatrist who use the "talking cure." Secrets become heavier and heavier over time. You already carry enough around.

Thanks everyone. You've given me a lot to think about. I appreciate your support and understanding. I am glad that you are here and you understand!

It's hard for people to understand our pain. Take your time, 'till you understand it well. No one knows why, or how to cure it. We are a miserable mystery.

Your mate should know first, and to keep it private, as your emotions will go up and down with this awful illness. Get a good sleep study and a good sleep specialist.. Ask re: Xyrem for sleep. it works wonders for the pain and stiffness in the morning.

I take oxycodone for the pain and it makes it almost bearable. Sorry you've got to deal with this, too, but we are here for you, Abby

Abby, thanks for the specific advice. I don't want to tell my husband yet. He is sort of tired of me being sick all of the time and all he even knows about is lupus. He has even mentioned divorce but not on much of a serious level. I just know that it plays at the back of his mind.

Our lives have changed so much since my lupus diagnosis a couple of years ago. My husband is very active--outside all of the time. He rides bikes and ATVs and loves being outdoors.

A lupus diagnosis means that I have to stay out of the sun. Having both fibro and lupus makes me exhausted and in constant pain. I am not able to do all the "fun" things with him that he likes. I am just trying to breathe and get through each day.

He and I are both really struggling with the loss of our life as we once knew it.

Sorry for the long rant. Thanks for listening!

One piece of advice is, if you want this private now or later, and yet your choose to share this with someone. It's a lot for that person carry on their shoulders as well.

Some people you automatically know they will respect your wishes. But for others, especially your immediate family and husband may need help themselves coping with someone who has a chronic disorder...wait, there's two of them.

Think of it this way, not that you are at this point. But imagine your loved one needing to take care of someone who is ill. All the time, they too will need to have support.

People are drawn to talking as one of their coping mechanisms.


If we ever share our details about our illness with others, we need to expect that they may share it with others too at some point or another.

I'm not crazy about every Tom, Dick and Harry knowing about my fibro....heck, I sometimes don't even tell doctors (ER, etc) but I'm okay with my family knowing. If I'm having a bad day, then I don't feel the need to make any kind of excuse.

Settle into this dx sweetie. Acceptance and grieving over it seems to be a cyclical type of event. You may not feel like sharing it now, maybe not this year or the next 5, but it will keep cycling and I hope that you feel comfortable at some point to share.

Welcome to the group!

"in sickness and in health" doesn't seem to mean much anymore. It's more like "that's not what I signed up for"

Everyone's situation is different, but when I told those that I was closest to I received a total lack of caring and understanding, just the opposite of what I was hoping for.

When I tried sending education info to them it was met with utter silence. My mother who used to be a nurse told all my siblings it was not a real illness and of course they believed mama.

It all left me confused and feeling bad about myself. Think carefully and go with your gut because even many medical personnel still think it's all in your head.

I just found out that I have diabetes, too. Or, type II. ;-)

Honestly, somehow in my grand education, I had no idea now serious diabetes really is. I remember when I took this fibromyalgia class, the instructor, who had fibro, said, "The good news is fibro won't kill you....and the bad news is fibro won't kill you." Well, diabetes WILL kill me in one way or another. 80% of people with diabetes will die of either a heart condition or a stroke (the two things that run on both sides of my family and of which I am most afraid).

I have mentioned the new diagnosis to a couple of people on DS privately, but today, I am in a place were, --- screw it. I have it, so why not talk about it. I even did a search to find out if others with fibro have diabetes, too. I am not the only one, I discovered, which made me more secure to share this new piece of information.

At this point, I am not going to tell anyone about this but my DS family and my immediately family. Oh! Wait. That's about everyone I know at all. Well, I think you should just do what your gut tells you. In my life, my gut has been the best director of all things positive in my life, so I say if your gut is feeling weird and scary about giving this information to others, you should probably not do it. It's not like you're going to be needing some exotic treatment for it. There are no treatments, really, as you already know.

I doubt that what I have said will really help, but I'm trying. I keep feeling like I'm yelling into the wind when it comes to fibro/ME

I don't think it is wrong that you haven't told them yet. You will in your own time. I think after you have time to digest it and do some research about it, you will feel more comfortable about talking to your family. It is hard for people to understand, even the Doctors don't really get it. I found this cool thing on facebook called fibro colors. They post many different things, not always about fibro either. I have always been pretty quite about mine, just telling people I don't feel well, but now I have been sharing things that they post and many people are giving me encouragement. I also found out that, my suspicions are probably right that it may be genetic, because other family members have it. My cousin from out of state, that I haven't seen in 35 years, has really been encouraging on facebook, and informed me about cousins who have fibro since I started sharing the posts. I guess after 10 years of suffering, I got tired of it (being a secret). It took me awhile to like that page and the Fibrotv page(because I don't want people to feel sorry for me and I was worried that they would judge me), but I am actually getting feedback that is making me cope better and not feel so alone. What the best part about it is that my family and friends are reposting and sharing some of these things, which makes me feel encouragement that they are there and they do care. I think it's a cool way for others to learn about our Silent Disease.
Take your time, do things at your own pace. I wish you the best. But please don't let yourself get stressed out about it.
Always Hoping for a Better Tomorrow!!!!
Monica

@Marsha, I just want to say that you are not alone in fibro and diabetes. The weight gain incurred by the first fibro med they put me on brought on diabetes about 5 yrs after diagnosis.