CFS/FMS friends and loved ones need our support and encouragement
Often the most difficult part of having a chronic, debilitating illness like CFS/FMS is the lack of support the sufferer encounters. People seem to be programmed to think that they have to see someone is bleeding before they can believe they are hurting. Unfortunately, they often ignore what the sufferer is saying “because they think they look fine.” Here are some things you can say or do to encourage a person with an invisible illness:
To acknowledge their situation:
“What you are going through must be very difficult.”
“I can’t imagine what you must go through daily.”
Acknowledging their situation lets them know that you love them even in their broken state and respect them for their perseverance.
To acknowledge their losses:
“I am so sorry you can’t work anymore.”
“I can’t imagine not being able to do the things you once loved to do.”
Acknowledging their losses will show them you have compassion for what they can no longer do or enjoy. Most of all, it shows that you believe that losing their ability to do something is unimaginably heart-wrenching for them and not in any way something they have willfully chosen for themselves.
To show them you are listening:
“Honestly, how are you doing?”
“How can I pray for you?”
“So, what is really going on?”
Occasionally, you may want to take a moment to ask how they are doing and then listen – it’s not necessary (or appreciated) to do this every time you talk to them or see them. Showing that you care by spending time with someone is often enough. If your loved one feels very ill every single day, it’s better to ask how they are doing rather than how they are feeling. This addresses how they are dealing with their challenges, struggles and emotional state, which unlike how they are “feeling” can fluctuate.
To show them you are aware of their circumstances:
“I am so glad you are here.”
“Thank you for coming!”
“I appreciate the effort it took to get here.”
For a person with a chronic illness like CFS/FMS, pushing to make it to a gathering, then sitting, smiling and talking is like having major surgery, climbing Mt. Everest, and then being crushed by King Kong. It is not because they are feeling well that they are there, it is because they desire fellowship and friendship and are willing to pay a high price to get it. A comment like, “You must be having a good day,” or “Wow, you must be feeling better,” makes them realize you probably don’t have a clue what they had to go through to get there.
To show them you are willing to help:
“I’m going to the store, can I pick up something for you?”
“Can I bring you lunch tomorrow?”
“Can I wash your dishes while I’m here?”
Maybe you think they do not require assistance because you think they “look fine,” or you may fear helping another person would be too time consuming when, in fact, it only takes a little bit of your effort to make a very big difference! What used to be a simple task (like taking a shower or making a meal) has become insurmountable – they are faced with constantly struggling to get things done! What they really need is for you to help without it being a burden on you. Before leaving for the store, try giving them a call to ask if you can pick up something for them. This keeps you from investing a lot of time and it saves them countless energy and sacrifice – it also keeps them from feeling guilty about you going out of your way!
To let them know you enjoy their company:
“Oh, good! I was hoping you would make it!”
“I am so glad to see you.”
“I enjoyed visiting with you yesterday.”
The biggest reward for all of the effort that goes into making it to a social gathering, meeting for lunch, or just having a visit, is being appreciated! If you get a chance, drop them a note that confirms your enjoyment of their company, so when they are at home paying the price, they are reminded of how much it was worth it.
To show them your admiration:
“You are so strong!”
“You try so hard – you just keep fighting.
“I admire your courage.”
Disturbingly, it is common for a person suffering from a chronic illness to be treated as if they are not positive enough, do not try hard enough, do not have anything to complain about, and they just do not want to get better. Imagine being imprisoned inside a body that will no longer cooperate with your desires. Every morsel of your will yearns to do the things you used to do, but no matter how hard you try, you collapse with incapacitating, crippling, bone-crushing fatigue that grips you in its hands and pulverizes your very being. If others would just take a moment to realize how much the person has been through, what they go through daily, how many tests they have had, how many doctors they have seen, how many medications they have tried, how much research they have done and how much money they have spent to battle the illness, they would recognize their friend or love one’s amazing courage and perseverance! It’s time to voice your admiration for their incredible strength and determination!
To let them know you appreciate your health:
“You have made me realize how much I take for granted.”
“You really make me appreciate being able to do things I never even thought about before.”
Nothing is worse than a healthy person complaining to an ill person about all of the things they had to do. These are things healthy people are able to do -- things that chronic illness sufferers only wish they could do. It is like complaining to a person confined to a wheelchair that you had to walk a couple of blocks to the store. If a person stricken with a debilitating illness ever got their health/life back, they would joyfully dance through the streets, feeling free and thankful for every step they took. It helps when a loved one takes a moment to realize what they have; and it is a relief to know that they did not have to lose their healthy lives in order to learn this.
To give them a compliment:
“You look especially nice today.”
“I like your hair that way.”
“I couldn’t have done it without your input.”
“You have good ideas.”
“I appreciate your friendship.”
Be careful of well meant compliments like, “You look good, you must be feeling better.” You are connecting how they are looking with how they are feeling. Remember, they have an invisible illness. Also, most sufferers have lost a large degree of their cognitive abilities as they struggle greatly with memory, function and word recall (brain fog – it feels as if cement has solidified in the brain, keeping it from operating). Therefore, they often feel self-conscious about their inability to express their intelligence. Try letting them know how much you respect their input and/or intellect once in a while and believe them when they share with you their struggles with cognitive functions.
Adapted from “HELPFUL
HINTS, a Guide to Understanding What People With a Chronic, Debilitating Illness
Are Going Through, Feel and Need From You!” written by Invisible Disease
Advocate (IDA), PO Box 621106, Littleton, CO 80126-1106. The author has another invisible illness, Multiple Sclerosis.
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