Family Support

Hi all ~

I am frustrated with my family. I finally got a diagnosis that explains my symptoms for the last 15 years, and part of me is relieved to know WHAT it is that I have been dealing with. My husband however, is acting like it's not happening, has not explained anything to my stepsons ( I have), has not even researched Lupus to see what I'm talking about.......I could scream!!!! Thanks in advance for letting me vent ~ Jen

I understand Jen. My husband is very helpful but we don’t talk about it much. And when we do he always says having a positive attitude will make it better! So we just don’t really talk about it. And my parents are pretty supportive but sometimes my dad is just very emotional like I’m dieing - which doesn’t help me feel any better- ha! I know they say everyone copes with everything different but I’m with you I don’t understand how they don’t see that’s not helping. I also felt some relief finally knowing what was wrong- not relief that I have lupus but relief I wasn’t crazy and this stuff wasn’t just in my head. Hopefully it gets better for you!

Thanks Crystal ~ I am sure part of my anger comes from being sick all those years and no one ( including me ) understanding it. I spent much time feeling guilty, and blaming myself for not feeling well. Now I want everyone to know that "It's NOT my fault - I've been doing the best I can !!" and it would be really nice if someone made an effort to understand what I've been through. At least here, on this forum, people really do understand :)

Has your husband gone with you to your doctors visits? We usually always go with each other's doctors visits if it's about something really helps them understand.

And, now on the opposite note, my family pretty much distance themselves from me. I hardly hear from them, and if we do happen to get together and I ask how they are doing, it is never reciprocated. It hurts.

You will always have us around though!


Hi Art Chick,

He wasn't in the office with me, but he drove me to the doctors appointment. I told him the Dr. was thinking I had Lupus, and ten days later we found out I had a positive ANA. Meanwhile, I researched Lupus and realized that I had 10 out of 12 symptoms. I guess I should mention that his first wife of 25 yrs was very ill with severe migraine disorder and pretty much bed bound. She passed in her sleep 3 years ago........ so the last thing this family needs is another sick mom :(

Oh, that's so sad! I don't have any major organ involvement, so most of my symptoms can be helped by meds. I don't have a "death sentence". That's another reason why it was good for my hubby to go. He realized mine wasn't life threatening ( hopefully never) and he helps me by reminding me of that when I'm down. I just had an MRI for migraine I'm worried again. ; )

Good luck sweetie...and take care.

Its understandable why your husband may be feeling the way he does. Losing his previous wife just 3 yrs ago is still a fresh wound in his mind. But he married you! He vowed to take care of you in sickness and in health! Just keep open the communication and always tell him how you’re feeling physically and emotionally. I’ve been blessed with a wonderful husband despite everything that has been thrown at us, and I try to give him all the appreciation I can on the “good” days. Good luck to you friend:)


look at it from a man's point of view...they are fixers. They cannot fix this. If you can, try to convince your husband to go to the doc with you, if not leave info and pamphlets around for him to pick up on a whim, especially if you aren't watching. The best thing tho is to try to get him to join this site and join the group for family members.

Big hugs,


Hello, it’s okay ! Everybody will have denial and be scared of not knowing what is the cause of a loved one pains and aches! But that is human . So Please forgive them ? It is up to you to let them know about some of the things that has been in your life of pains- this really helps to over come this part for them . Getting knowledge for yourself with the new life of Living with Lupus , is a gift that will help them to understand what Lupus is and how it is affecting your life and there are things that your body will and won’t do . It is a very different change of plans , because Lupus flares come When they wanT to and there is nothing that we /you can do . They will happen . So YOU have to bring the knowledge to them !!! Take someone to the doctor visits with you and ask your doctor to let that person in the room so he can give them a over all view of what Lupus is and the how’s and to answer any questions that they may have , It works ! I did this fRom day one and my son was /is /the boundary line for me . He totally takes over when he see me going through rough moments and direct whatever to his attention , and that include people that want to fuse or argue . So it your call for the support of the family that lives with you on a daily base. Find out information to let them know about and even if that don’t work just be yourself as much as possible they will see that you are hurting as much as they are because you cant be who they know you as , (for the moment ) . Take care and hope that soon everyone will be just as fine as YOU are doing Good.smiles and huges…Beverly L.

Thank you everyone for the feedback ~ I will bring my husband with me to my next appointment. That's a great idea. And I will try to be patient with myself & my family as we learn to navigate through this.

I completely understand your frustration. I too found some relief when I finally received a diagnosis. Sometimes I often get the “you don’t look sick” or the “I know someone with lupus that has…” Not sure if this is a common experience but it’s certainly annoying and sometimes makes me wonder if I’m going crazy and it’s all in my head. Maybe give it some time. Its still pretty new and maybe needs some adjusting to. I hope things get better for you soon.

I agree with many of the comments above regarding your husband's denial as a way to cope. In my line of work (I'm an Substance Abuse Counselor) I spend a lot of time educating clients and their families about the coping skills with develop in abnormal situations. We all have normal coping skills to deal with normal stress. We have an argument with our significant other we take a time out, cool down, talk to a friend and make your peace.

Lupus is not a normal situation and our families will develop abnormal coping skills. They might shut down, they might try to compare it to something they understand, they might get angry with you for being sick. This is a disease that symptoms impact one person but affect the entire family system. I feel that having our families engaged in our treatment helps them understand and cope and can give them an opportunity to express their frustrations.

Hi j, my husband is in major denial,and one of my daughters will not talk about it at all.My oldest daughter has fibromyalgia so she talks with me about it,My son,bless his heart is always trying to find ways to make me better.“Funny.” He googles everything,I’ve had lupus for yrs…you can find some great books on amazon regarding lupus and everyone one on site is so helpful," you can get some links from Ann on vitamin D…great info,I take 2000mg a day…it’s helped…I got gummies because I take a lot of meds and it makes me feel like I didn’t add anymore pills to my list…welcome to life with lupus J… CELESTE

Hi!!! it is hard but as time pass , things do get better . But you have to be the captian of this ship alone guiding through the currents of Living with Lupus, best wishes and remember that we are here 7/24/365 always...Beverly L.

JSunshine said:

Thank you everyone for the feedback ~ I will bring my husband with me to my next appointment. That's a great idea. And I will try to be patient with myself & my family as we learn to navigate through this.

Been there, took 15 yrs to get my yes it is lupus, my family told me during that 15 yr time i was a faker, i was expected to do everything as i normaly did even take care of a baby and my grand kids and work and just deal with it and get over it and the last one from my last family doc. call me when u have a real desiese.

Wow. Sounds like you might need a new family doctor, that treats you with respect.You deserve that :)

Jen, I understand completely. Having to teach people about your disease is the hardest part since they can not see what you feel. I too have a husband who told me I was crazy for years and years. NOt until I experienced some permanent joint damage and needed a knee replacement did he take me seriously. Since then, we have made a new normal in our family, teaching our children, building a support network of friends who can carpool or babysit if needed. Ask him to go with you to Dr. appts, I think hearing from others is helpful. Also, suggest you both find a local Lupus support group! Much luck!


I really hope that helps. My husband probably knows more about Lupus than I do, but that is partially because by the time I was diagnosed I could not remember anything or sometimes anyone and he had to get the info as I couldn't recall it. It was a blessing because my doctor held nothing back and he would have to remind me what the doc said. I am so pleased that you have a diagnosis now, even tho it's one I wouldn't wish for anyone. You are a strong woman and keeping your family informed is very important for all of you as this doesn't just affect you but is a "family" disease in that the more they know the easier it will be when you have a bad day.

Hopefully, with your treatment those will lessen some and you will be able to understand what brings on a flare and how to avoid them.

Biggest hugs,


JSunshine said:

Thank you everyone for the feedback ~ I will bring my husband with me to my next appointment. That's a great idea. And I will try to be patient with myself & my family as we learn to navigate through this.