The Sentence No One with a Chronic Illness Wants To Hear!
Living with a chronic illness like lupus can be challenging: the diagnostic process is arduous, the symptoms are unpredictable, and the treatment “trial and error” is grueling. However, one of the most difficult problems with the complex “living with lupus” equation is not dealing with anything mentioned above, but rather, dealing with others’ opinions about your illness.
When you tell someone that you have lupus, if they know what it is, he or she usually responds with some sort of “fix it” statement. This is normal and a common response for most since there is an innate desire for resolution and, in general, people don’t want to listen and be silent; they want to offer their opinion of what your solution is.
Have you ever been told one or more of these statements?
You need to try this diet…
You need to exercise more…
You need to de-stress your life…
You need to take this medication…
You need to quit your job…
You need to find a hobby…
You need to take this supplement…
You need to join this group...
You need to see this guru…
You need to listen to me.
“You need to listen to me.”
How many times in my 28 years of living with lupus have I heard those words? Well, let me say, if I had a tic-tac for every time I was told what I “needed to do,” I would be able to take my empty prescription bottles from Walgreens, (which I don’t know what to do with) fill them to the brim, and completely cover the state of Rhode Island.
The authoritative tone family members, friends, and acquaintances take when telling you how to live your life with lupus is rough. I mean, my 5 year old son can be a “bossy pants” but seems mild next to some who have bequeathed their unsolicited opinions on what I should or should not be doing in my life.
Why do people think that they have the right to project their opinions so openly about your life living with lupus? Let’s dig in and unearth this enigma, because I guarantee, what we will see is that this is more about them...than it is about you and your lupus.
People Around You Grieve Your Diagnosis As Well
Unless you live in a bubble with no interaction with friends, family, or the outside world, your diagnosis will affect others around you. One of the hardest parts about having lupus is dealing with how your “community” responds to the news. Will they be in denial? Will they be afraid? Will they leave? Will they try and run your life? The variances of reactions are more unpredictable than lupus itself!
Understanding that our loved ones grieve our diagnosis (just as much as we do) is key to understanding and coping with why they may behave the way they do and make certain unappealing and controlling comments.
You family, friends, and acquaintances may be experiencing denial, they may be angry, they may plead and bargain, and they may experience depression. Through those stages of grief, the “You NEED to do THIS” statements may arise. This can be a defense mechanism or it can also be projection, transference, fear, and even an attempt at avoidance.
How do you help your family process their grief while effectively communicating your needs, boundaries, and expectations?
Here are some ideas for you:
Honesty Zone: Always attempt to be honest and transparent in all your interactions with your tribe. Self-knowledge and mindfulness will help enable you to develop more trust in your own thoughts and feelings, therefore, others will feel more comfortable trusting you with their feelings.
Offense Not Defense: Everyone is on the same team here, so let’s learn how to work together. Defensive responses only make matters worse. However, being non-defensive doesn’t mean you are a pushover. It means that you have a realistic view of yourself and your situation, are open to hearing feedback, but (and here’s the big but), you can set boundaries about topics that are sensitive, “taboo,” and even hurtful. Through a non-defensive lense you may discover that you are overly sensitive to certain comments, yet are more open to discussing others. For instance, when your husband says, “You need to find a hobby” that may cause you to be VERY defensive, whereas when a friend says, “You need to try Pilates with me” you are more open to the idea.
Everyone Is Different: Accept and even appreciate the differences between you and your friends and family rather than allowing these differences to cause animosity and distrust. Each person in your life, , whether that's your partner or brother or sister, is unique (as are you) and a mature love involves an appreciation and respect for his or her uniqueness.
Avoid Mixed Messages: Become more aware of any discrepancies between your words and actions. This type of self-awareness allows loved ones to nurture trust and dependability. When you are straightforward in asking for what you need and feel, you open yourself up to vulnerability which allows the real you to love more deeply and be loved more deeply. On the other hand, if you are wishy washy about what you want and how you feel, people can misinterpret intent and make snap judgments leading to deep hurts and resentment.
Here are some ideas for your friends, family, and loved ones:
Knowledge Is Power: There is fear in the “unknown” so the more you know about lupus, the less anxiety you may feel. Try and learn as much as you can about the disease so you can support your loved one by being informed about what they actually go through.
Acknowledge You Are Grieving Too: Signs like irritability, sleeplessness, anger, and forgetfulness could all be from grief- related depression. Take care of yourself and get the help you need to deal with the stress of caring for a loved one with lupus. Remember the “E”ssentials - Eat well. Exercise. Get Enough Rest!
Find Your Passion: Release any guilt you may feel taking time for yourself. Set a goal of daily taking breaks to read a book, go for a walk, or get coffee with a friend. Find a passion like knitting, scrapbooking, or gardening...and don’t feel guilty about enjoying life! The happier you are, the more happiness you will project onto others.
Let Your Loved One Live! Encourage your loved one’s independence, use clear and healthy communication skills, and understand that he or she is an independent mind with different opinions, likes, and dislikes. They might not always agree with you, and that’s okay.
Harper Lee said in To Kill A Mockingbird, “You never really understand another person until you consider things from his point of view – until you climb inside of his skin and walk around in it.” This is true of you in your lupus journey. It is also true of your partner, caregiver, best friend, brother, or co-worker. So the next time someone says, “You NEED to do THIS” and you feel your blood pressure rise, remember he or she is trying his or her best to understand a disease that no one understands. And they are trying to do their part to help.
So breathe, let the anger go, and say, “Thank you.”
And then live your best life.
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2018.