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?

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

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?  Additionally, how do you not let their reactions bring out unhealthy feelings of guilt, resentment and sadness in you?  

One way to help this process is to try to understand why others react in the ways that they do – in other words exercise your own empathy.  By understanding the psychology behind the reactions of others, you can, in turn, reach a level of acceptance and honesty about your new normal.    

FEAR OF THE UNKNOWN

When you tell someone that you have lupus, and they refuse to acknowledge it, talk about it, or if they head for the door – it is probably because of fear.  Often, they are afraid that your relationship with them is going to change, and that 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 have to change on both sides.  Relational changes are often met with denial or abandonment as coping mechanisms for dealing with fear.

One solution for moving forward is to be honest when expressing to your  family members or friends that you are still you … even when you may need their 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.”

Another 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?”

One major 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!

VULNERABILITY

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

This feeling of vulnerability can have the effect of making others cling tightly to you – physically and emotionally – sometimes too tightly.  Though they are coming from a caring place, this can feel suffocating.  They may feel like they have to protect you from other people’s feelings or even the disease itself.   That may sound strange, but it happens.   This is when it is important to establish boundaries with a loved one.  There is no need to be rude or to avoid them, but be clear about expectations and things that are troubling you regarding their actions.    

TRUST

“How can I trust that you will be there for me if you are sick?”  Have you 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.  

Trust is a hard one because you truly cannot predict how you are going to feel from day-to-day.  The unpredictability of your illness is not always 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 friend’s request.  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 commitments you cannot keep.
 
Whatever you do…do not cry wolf (pun intended). Although it may be tempting, do not use your lupus diagnosis as an excuse. Do not say you have to leave work early, back out of a social engagement, or show up late, claiming  you do not feel well if that is not the case. This is a sure way to lose the trust of those around you. Once trust is lost it is hard recover.
 
JEALOUSY
 
When you have brothers and sisters, they may feel a twinge of jealousy due to the attention that you are receiving after your diagnosis.  This is a pretty common response.  After your diagnosis, a parent is more apt to focus more attention on you, which can create hard feelings 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 is a tip:  Remember that “hurt people – hurt people.”   People can say things in anger  because they are hurting.  Realizing the source of these feelings may help you both  keep from escalating those feelings further and are a good step toward the honest acceptance that we all need. Again, you need to exercise empathy.

If this jealousy becomes an on-going issue of disrespect or criticism, you need to be firm and honest with them.  “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.

GUILT

As the person who is suffering with the illness, it may be very difficult to not feel guilty about having to ask for help.  Maybe you feel guilty because you are being too dependent on others.  Maybe you feel guilty because you cannot 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

For the person with whom you shared your lupus diagnosis, 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 what another person is assuming about you.  You are only responsible for your own thoughts and actions.  You may have something really hard that you are dealing with right now (lupus), but to have guilt about it, is counterproductive.  As for the person in your life that might be feeling guilt about being healthy – give them a break.  Tell them it’s okay to live their life. 

 

Sources:
*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.