Having a chronic disease like lupus can be difficult, to say the least.  Coming to grips with the reality that lupus is now a thread in the tapestry of your life is scary and extremely overwhelming.  Once you are told you have lupus, you then have to share the “news” with the world (or at least those in your inner circle).   Telling others about your illness can be especially challenging and stressful.  You agonize over when to tell or even if you should tell at all.  You worry about what they may say and how it may affect your relationships.  


Why do you worry so much about telling people about your lupus?

I am going to come right out and say it – sometimes the hardest part of telling others that you have lupus is managing how they deal with your news.  Will they be scared? Will they be in denial?  Will they run away? Will they cling so tight it suffocates?  The variances of reactions are about as unpredictable as the disease itself.

So how do you deal with managing the feelings of others when you are the one living with the illness?  Moreover, how do you not let their reactions seep into the inner depths of your soul and cause you feelings of guilt, resentment and sadness?  

The only way to help this process is to try to understand why people react in the ways that they do.  Hopefully, by understanding the psychology behind people’s reactions, you can, in turn, process to a point of acceptance and ultimately, forgiveness. And with forgiveness, comes closure.  And closure means that though they may still be in your life, deflecting, and causing chaos, you are no longer responsible for carrying their caustic load.  


When you tell someone that you have lupus and they refuse to acknowledge it, talk about it, or they head for the door – it is usually because of fear.  They are afraid that your relationship with them is going to change.  And change can be very scary for some people.  You may not be able to continue to be a part of the same activities with them, your role or responsibilities in the relationship may shift, and expectations may change.  The best way people cope with the fear of these changes is through either denial, abandonment or ignorance.

One solution for moving forward in situations like this is to be honest with expressing to your close family members or friends that you are still “you” but you may need help now and then. “I tell patients and their loved ones that you need to let go of what was, and what could have been, in order to enjoy what is and what still can be,” says Meenakshi Jolly, MD, MS, director of the Rush Lupus Clinic and Assistant Professor of Medicine and Behavioral Medicine at Rush University. “Once you accept this, it often makes living with lupus a lot easier to handle.”

The other major fear that people may project on you – is the fear that you are going to die.   One of the first things someone asks about lupus is, “Is it fatal?” or “Can you die from this?”

The best way to lessen everyone’s fears and concerns about the risks of lupus is to share information about the illness and its prognosis.  Tell them the facts:

    • Although there is currently no cure for lupus, today’s modern medications and treatments can be very effective in helping people with lupus live longer and healthier lives.
    • 80 to 90 percent of people with lupus can expect to live a normal lifespan.
    • And…it can go into remission!


When you tell someone you have lupus, you are sharing something very personal.  That can make you feel vulnerable and might make you feel open to personal attacks.  When people receive the news that you have lupus, that can make them feel vulnerable as well.

The feeling of vulnerability can make people cling tight.  Sometimes, too tight.  Though it’s coming from a caring place, it can feel suffocating.  They may feel like they have to protect you from doctor’s opinions, other people’s feelings, and even the disease itself (sounds strange but true).   This is when it is important to establish boundaries with a loved one.  No need to be rude or avoid them, but be clear about expectations and things that are troubling you about their actions.    


“How can I trust that you will be there for me if you are sick?” Ever heard that one?  I know I have.  It is very hard for people to trust that you will show up and be reliable when you say you will.  This is not because they believe you are flakey, it’s simply because of the unknowns of the illness itself.  

Now this is a hard one because you truly can’t predict how you are going to feel from day-to-day.  The unpredictability of your illness is not in your control.  So what do you do to get people to
trust you and feel that you are reliable?  You must control the controllables.  This means that you can control your attitude,  you can control how you respond to an email, a co-worker, or a work call.  Do the best that you can with what you’ve got.  
Another thing to remember is this: Let your “yes” be “yes” and your ‘no” be “no.” This is another way of saying, try not to overcommit.  That way you are not overwhelming yourself with people’s expectations of you.  
When you have brothers and sisters, they may feel a twinge (or lightening bolt) of jealousy due to the attention that you are receiving after your diagnosis.  This is a pretty common response that is particularly normal when the parents relationship with the offspring is affected.  After your diagnosis, a parent is more apt to shower attention on you, which can reignite or reinforce old rivalries between you and your siblings.

This can be a tricky situation to deal with.  And it can be particularly challenging not to internalize their projected jealousy and become resentful of them resenting you. Here’s a tip:  remember that “hurt people – hurt people.”   People say things in anger (which is really hurt) because they are hurting.  Realizing the source of these feelings may help to not allow their feelings to hurt you.  

If this is an on-going troublesome issue of disrespect and constant criticism, you need to be firm and honest with the jealous sibling.  “Tell your sibling, I don’t feel respected when you do that,” says Sheenah Hankin, Ph.D. “Your sibling may not be totally conscious of what she is doing and doesn’t really understand why she is doing it.” Speaking up may help extinguish the cycle of disrespectful behavior.


As the person who is suffering with the illness, it may be very difficult to not feel guilty about having to ask for help.  Or maybe you feel guilty because you are being too dependent on others.  Maybe you feel guilty because you can’t do the things that you once did with your family.  This is pretty normal and it is a part of the grieving process that one goes through after a diagnosis.  

Two best friends solve their problems sitting in cafe

And for the person who you shared your lupus diagnosis with, it can be difficult for them to not feel guilty for being healthy.  There can be guilt on both sides.  

The trick is to remember that guilty thoughts are not facts.  You cannot assume to know exactly what another person is assuming about you.  And you cannot assume responsibility for those thoughts either.  You are only responsible for your own thoughts and actions.  You are in your own lane.  You may have something really hard that you are dealing with right now (lupus) but to have guilt about it (or it’s counterpart, shame), is counterproductive.  And for the person in your life that is feeling guilt about being healthy – give them a break.  Tell them it’s okay to live their life. You don’t need to carry their guilt, you’re tired enough as it is.  


*All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at info@kflupus.org for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus. **All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.    




Article by : Kelli Roseta

Kelli Roseta has been living with lupus since she was diagnosed at 11 years old. She is a tireless advocate for those living with lupus.