The "F" Word - Fear

This is the main reason why you will not act on your impulse to remain a friend. Because of the changes that have occurred, you are confused and feel helpless in the situation. You don't know what to say, what to do - so you say or do nothing. It is less work to let a friendship die than to keep it alive.

But you're a busy person - you have responsibilities. Where can you find time for someone who seems to need so much? If there was any time to spend with them before they were disabled, then you have to decide to make time again - if you are a friend.

But hospitals give you the creeps. That's too bad. Let me tell you who's got a worse case of the creeps - the patient! If you think they like it there, think again. Hospitals are not designed for anyone to feel comfortable. Suck it up and go visit.

The "F" word and your response:

"I don't want to hurt their feelings."

This is a common concern, and in some ways it can be hard to avoid. You can try to walk in someone else's shoes, but in truth unless you could actually trade bodies for a week, you will never have an idea what that person's life is like. The trick, I guess, is to learn how to think before you speak. Most adults have to learn to do this at work, in their families. If you think it might hurt someone - don't say it. It's hard to do - but like everything else in life, practice makes perfect.

"What do I say to someone who is hurting?"

Would you feel less pressure if you didn't have to say anything at all? Then relax, because sometimes the less you say the better. It is more often your actions that will speak for you. And the action of listening instead of persisting in idle chatter can mean so much more to someone that still needs that shoulder of yours, even if it's getting a little soggy. What does it cost to give a hug? What is the price of holding someone's hand for a few minutes? What is the financial expenditure of a mild neck rub, or an arm to lean on as they walk? Once you find that the human cost of not doing these things is much more expensive, you will be ready to be a friend.

"What shouldn't I say?"

This question has many answers, and many have come from disabled people I know. These may not be hard and fast rules, and may need to be adjusted for the situation, but they end up being universal.

"You look great! Or, You're looking much better!"

This implies that you expect them to feel great, when that may not be the case. Many illnesses and disabilities are invisible, and belie the underlying pain and suffering accompanying them. Instead ASK how they feel, and really listen. Take your cue for further comments about their appearance from their answers.

"At least you're not in a wheelchair."

What you don't hear is the rest of that statement. In response to that comment, the disabled person may think "not yet, anyway - and then I can count on you to say something else hurtful to me."

"At least you can still (hear, see, walk)." Or, the classic: "You should count your blessings."

If you have not experienced the loss, don't assume it's easy to discount one. If you have, you are still too bitter to help anyone yet.

"You shouldn't have tried to work two jobs."

Is it really your call to blame a sick person for their illness? No. Blame is the most worthless concept on the planet. It accomplishes nothing, except to hurt the target. This applies in all areas of life - there is no reason for blame except to hurt someone. Try to remember who hurts most when you blame yourself for anything. And how the situation remains amazingly the same.

"You just haven't found the right doctor."

And you can't understand what chronic illness/disability means. Some illnesses make a person sick for many years without killing them. Pain, trouble walking and working accompany this person every single day of their lives, and there is no end in sight. If anything, there have been too many doctors with too many conflicting answers. The probability of a cure is not an issue - the necessity of living with illness is the only acceptable option. Your acceptance of their reality impinges on the disabled person's acceptance of life with illness/disability.

Even when you try, things don't always work out ....
What if they say no, they can't do whatever?
Let's say you asked them to lunch, or for coffee. The person says they are not up to it now. Think about making a contact possible - on their terms. What if you brought over some treat, stayed for a short time, and gave a rain check for an outing for a week later? Maybe they are not able to "entertain" and they feel pressure to entertain people that come over. Can you think of a way to visit and be the entertainment so they don't need to? Can you stop by with some food that can be warmed up later for their dinner, not stay long, and then call them later in the week?

What if they say yes and cancel at the last minute?

This is common with chronic illnesses that ebb and flow, like Multiple Sclerosis, Lupus, and Chronic Fatigue Syndrome, for example. The person really wanted to go, gets psyched up for it, and when the day comes there is physically no way they can go. They feel bad for disappointing you, and they are disappointed in themselves. They can't control their bodies, and that is frightening.

Can you save the day?

Are you flexible enough to translate their unpredictable health into your talent for spontaneity? Rent a movie and bring it to them. Order a pizza, or pick up sandwiches, and make it a small mini-party. After all, who is going to miss you more - the Eagles or your friend?

‘They have a phone, too - why don't they call me?

There is a difference in the dynamic when you call from when they call. When you call, you always have something to offer, if only your companionship, a kind word, an errand. When a sick person calls, it is an imposition on your time, and no one wants to impose. They don't want to be a bother, and if they have already had friends disappear into the woodwork, they'll stop calling anyone just in case they feel they pushed others away with "being needy." You need to make the call, and keep making the call.

What can I do for anyone?

Next time you head out to the grocery, try calling your pal and asking if they need a few things, then get them. When you bring them by, no big deal, no dramatics. You may slowly becoming an angel on earth, but you don't have to tell anyone that.

Remember: Make the call ,Keep calling ,Keep asking ,Keep contact ,Don't give up ,Don't give up ,Don't give up !
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Part 2 About the Author & Comments from the Author ... Sue Klaus, M.A


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I am a trained audiologist who worked with the hearing impaired for 11 years, while slowly being affected with the chronic illness called Chronic Fatigue Syndrome. More than 15 years after the illness started, I would like to help people keep friendships alive even after life-changing events. I have been on both sides of this dynamic, and have some insights to offer.
Some Friendly Advice Dateline: 10/28/98

"The hardest thing is not to be able to work magic for a friend." - Maya Patel

This week's feature is written especially for those who have friends or other loved ones coping with CFS and Fibromyalgia. Chronic illness presents a variety of challenges to relationships at a time when they are needed the most. Most people with CFS/CFIDS and Fibromyalgia feel an ongoing need to talk about their illness and its impact on their lives. At the same time, many people become more distant or reclusive; this is especially true during periods of severe symptoms, because being around others requires energy that is in such short supply. These alternating needs for distance and closeness can be difficult and confusing.

In addition, a person with Chronic Fatigue Syndrome (or PWC) has experienced enormous losses due to illness. CFIDS often affects every aspect of a person's life, causing a decrease in self-esteem. Once strong and self-confident people may feel inadequate and unlovable due to lack of productivity, inability to work or engage in other activities, discouragement about recovery, coping with debilitating pain and fatigue on a long-term basis, and so much more. Yet the PWC is not the only one who is suffering.

Watching a friend or loved one struggle with an incurable and poorly understood illness often makes people feel powerless and discouraged. But your friendship does matter, now more than ever; and there are many things you can do:

Educate yourself about CFS/CFIDS. Read articles about personal experiences and coping.

Be patient and caring. Reassure your friend of your love and support.

Acknowledge the seriousness of the illness. Validate feelings of loss, sadness, anger, and hope.

Offer to help in practical and specific ways; such as grocery shopping, managing finances, running errands, or household chores.

Attend doctor's appointments with your friend. Show interest in their medical care and be there to provide moral support.

Most PWCs both love and hate hearing "you look good." It's okay to say it, but understand that looking good doesn't necessarily mean your loved one feels good!

Spend time together, enjoying activities that can be modified if necessary.

Make plans flexible to accommodate unpredictable symptoms and fluctuating energy levels. Be understanding when they must be changed or canceled at the last minute.

Be wary about giving advice. Don't attempt to "fix" the PWC or provide a solution.

Realize that your loved one may seem "okay" while you're together but then pay an enormous price later for the over-exertion.

Ask questions about things you don't understand.

Enjoy low-energy activities together; such as watching movies, sitting outdoors, and eating meals together.

Express gratitude for what the PWC still gives to you, even though they may not be able to do some of the things they could before.

Reassure them about how important they are in your life.

When you are not sure about how to be helpful, just ask.

Be aware of unpredictable mood swings. Try not to take reactions personally that might seem illogical or over-emotional.

Talk about the changes in the PWC and in your relationship together.

Listen while your friend expresses needs, emotions, and thoughts.

Express your admiration for your loved one's strength in coping with illness so far.

Learn to be perceptive. You don't have to be a mind-reader, but you can watch for signs of how your loved one is feeling, or when they may need extra help and support.

Stay in touch and extend invitations, even when the PWC may not be able to accept.