Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

"You looking good," said Sethe.
"Devil's confusion.  He lets me look good long as I feel bad." said Paul D

in Beloved, by Toni Morrison

How many times have you heard, "But you don't look sick!"  How does it make you feel?  And how do you respond?  In her article, "Looking Good, Feeling Bad," Geri Fosseen expertly describes the emotions that are a normal reaction to such comments: anger, confusion, shame.  It seems that no matter how long we've coped with Chronic Fatigue Syndrome and Fibromyalgia, seemingly innocent comments from friends and strangers touch a wound that still feels amazingly raw.

Often the question I most dread hearing from an acquaintance is "How are you?" This seemingly innocuous ritual of polite conversation is fraught with complexity and emotion for me.  I wish I could be like other people who can reply, "Fine thanks" without a second thought.  But when discouraging and painful symptoms are overwhelming, this simple response feels like a lie.  Besides, I'm usually concerned that people don't really want to know, that they will tire of hearing me talk about my illness, or that they'll think, "I can't believe you're still sick."

I have a couple of wonderful friends who ask me "how are you?" twice.  The first time I respond like everyone else.  Then they say, "okay, now how are you really?"  Then I feel comforted, knowing they are truly interested and prepared to listen.  But even when people do want to know, sometimes I'm tired of hearing myself talk about it.

In their book Sick And Tired Of Feeling Sick And Tired, Donoghue and Siegel point out, "where need is most pronounced, feelings are most intense."  Coping with a poorly understood and invisible illness leaves us feeling lonely, vulnerable, and over-sensitive.  Just as we struggle with an illness that is so difficult to understand, others find it even harder because they haven't experienced it.

At first many people are sympathetic.  But as time passes, they may question the existence of an illness that is invisible and incurable, or they may simply feel too uncomfortable to acknowledge and understand it.  Author and CFS sufferer, Katrina Berne, says "Our society encourages denial of all things unpleasant, especially those we fear or cannot readily understand."

Without visible signs of pain and illness, we're often left feeling the need to explain or even over-emphasize symptoms around others.  Desperately wanting to get well, yet wanting clear signs of illness to validate our pain and fatigue, we're left with a sense of confusion and self-doubt.  Around others, it's difficult to know how to act because we're caught between contradictory wishes: wanting to appear normal and wanting to be understood.  So what can we do?

First, realize these feelings of frustration, confusion, and sadness are natural. 
Acknowledge the pain of dealing with such a difficult illness.  Don't beat yourself up for not coping better.  Remember you're doing the best you can.  Other things you can do:

Understand and accept your changing needs, and realistically evaluate who can help you.
Chronic illness inevitably changes friendships.  Some become closer, while others might end or become strained.  Some people will surprise you by standing by you when you thought they couldn't possibly understand.  Accept what people are able to give, as well as what they can't.  I have a group of friends and family I privately call my "A-team."  Those are the people I can truly count on to understand and support me.  Others might still play a role in my life, but my expectations are different.

Communicate your feelings and needs to people with whom you are close.
Ironically, this is often the hardest one of all.  Even though we now have many more needs due to illness, it can be difficult to acknowledge them to ourselves, let alone communicate them to others.  We're afraid people will be overwhelmed or resentful of our neediness.  We fear they cannot understand.  We think that maybe they just don't care.  But often these fears are unfounded.  By communicating what we need, we give other people the opportunity to help (which often makes them feel much better).  They still have the option of saying "yes" or "no," but we have to ask.

Maintain a balance of friendships with PWCs and others who are not sick.
Sometimes we need the comfort and understanding that only another person with CFIDS can provide.  We can build new friendships through support groups or the Internet.  But sustaining relationships with healthier friends and loved ones is also important and can help lessen the monotony of coping with illness.  Just as before we were sick, different friendships play various roles in our lives.  Some are deep and intimate, while others revolve around a shared interest or activity.  Remember that it's not necessarily important for every friend to understand what having CFS is like for us.

Understand that others might be struggling with problems and feelings of their own.
The impact of a chronic illness like CFIDS on our lives is so huge, that we may tend to forget we ever had problems before we were sick!  It's helpful to remember that others have many real challenges and worries that have nothing to do with us, just as we did before Chronic Fatigue Syndrome.  In addition, watching a loved one struggle with illness often makes people feel helpless and uncomfortable, and they may behave in awkward ways or simply feel the need to create distance.  Their emotions of fear, disappointment, and loss are often complicated by feelings of guilt for being healthy or for having needs that the PWC may not be able to meet.  Keep in mind that others' reactions may have more to do with them than with us.

Provide feedback about things that are helpful.
Often we are so overwhelmed by so many needs that cannot possibly be met; the loss of control is great, and sometimes there is nothing anyone can do to help.  Others may really want to be helpful, but they are not sure what to do.  Good intentions sometimes backfire, and they may be left feeling afraid to make things worse.  It's essential to appreciate the things that are helpful; let people know when they are doing something right.  Communicate how much you love them and appreciate their support.

Most of all, remember that you are never alone.  There are always people to whom you can reach out, whether they are right next to you or across the Net in other part of the world.  As Joseph Addison said, "Friendship improves happiness, and abates misery, by doubling our joy, and dividing our grief."  We all need a friend.

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