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Chronic Neuroimmune Diseases
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Last updated January 1, 2014

Helping Others Relate To Your Symptoms

©1998 Fibromyalgia Network

For people who don't have FMS or CFS, relating to your chronic, invisible symptoms can be difficult. Here are a few techniques that might help demonstrate how you are feeling:

The Kramis Touch
Neurophysiologist Ronald Kramis, Ph.D., of Portland, OR, used a shoulder pinching approach during a January congressional testimony to help committee members feel your pain. He asked the committee to reach back to the top of their shoulder muscle by the side of their neck, then press down or pinch that muscle until they felt some discomfort. For most people, the discomfort quickly turns into pain. This pain may radiate up your neck and/or across your shoulder blades. Even after you release this harmless grip, the pain can linger for five minutes. No cuts, no bruises, and no visible disease-just lots of pain. This is how many FMS/CFS patients feel all over their body. Dr. Kramis' testimony can be viewed on our web site or mailed to you as part of our "Advocacy Packet."

Ever had the flu?
Most people have experienced the unpleasantness of the flu at one time or another. The problem is, once their flu bug is gone, people can't seem to remember any physical pain or discomfort. The next time someone you know gets the flu, but they fail to grasp how you feel everyday, tell them that you feel like you have a never-ending flu. Since pain thresholds are often lowered by viruses, just press on a few of their aching muscles to leave a more lasting impression!

Hold that contraction!
Ask your friend to squeeze his/her shoulder blades together and then hold that contraction for several minutes. The tight, knotted feeling that develops in their muscles is similar to the pain and muscle fatigue that you feel all the time.

How was your first day at the gym?
Anyone who has just initiated a new (and often too aggressive) exercise program will wake up the next day with lots of muscle pain and stiffness. A person can also feel over-exhausted if they weren't careful to pace themselves. This post-exercise phenomenon has been coined the "Tin Man" syndrome by FMS patients. For healthy people the soreness wears off after two weeks of continued exercise; what a comforting thought! Just remind your friend on the second day of their exercise program that you have to deal with this achiness all the time.

Comebacks for Hurtful Comments
With invisible conditions like fibromyalgia syndrome (FMS) and chronic fatigue syndrome (CFS), people are bound to make insensitive and hurtful remarks. They can't see your illness and they don't understand your limitations. Psychotherapist and rehabilitation specialist, Don Uslan, MA, MBA, CRC, of Seattle, says: "ln my practice, everybody, both young and old as well as people with other chronic diseases that can't be seen, struggles with this issue.

The problem of other people's reaction to your illness, according to Uslan, is a double-sided issue. One side of this complex issue is your level of confidence in your medical diagnosis and the limitations it imposes on you. If you are shouldering any doubts about your capabilities, this can impede your ability to swiftly diffuse unfriendly remarks-which are on the other side of this issue.

Assuming that you are confident about your limitations, what's the next step? Uslan has patients ask themselves: Who is important to me and where do I have the greatest return on investment (as far as the relationship goes)? Your spouse/partner, children, parents, employer, and a few others may comprise your inner circle of people who are most important to you. Everyone else is on the outer circle.

"For several people in your outer circle, it may be worth it to make a modest effort toward educating them about your illness," says Uslan. Yet, you have limited energy and you may wish to concentrate on the people you love first.

Following are specific life situations and Uslan's recommendations on how you might respond to them--to minimize hurt feelings and to improve the other person's level of understanding.

Hurtful comments can be made by your partner because they feel like their needs are not being met or that they are being taken advantage of when it comes to the housework. Some things need to be renegotiated, while other problems require better communication.

Example: "I wish things could be the way they used to be."
If you and your partner used to engage in all kinds of sports and activities together, and you are no longer able to do this, then you may want to sit down with your partner and say: "Honey, I have six good hours a day. Three of it's spent with the kids, two of it's cooking and doing the chores, and I need an hour by myself. Let's figure out a way that we can spend more time together, but after that, I also want you to enjoy yourself. Play tennis with your friends. I'll tag along and watch you play whenever I can, but please have some fun ... it would really make me happy."

Example: "I do all the housework around here and you do nothing."
If this comment was made off-the-cuff (or something else that implies that you are not carrying your load), then Uslan recommends that you say: "I wish you would be more direct with me rather than to zing me like that. I'm trying as hard as I can. It's not my intention to take advantage of you. I've been in a flare-up for days now and I appreciate everything you're doing. I can understand why you are upset; I'm upset too. Maybe we should just accept that we will have a more cluttered home. You're exhausted and I'm exhausted, and one of us with FMS/CFS is enough." If the comment made by your spouse about doing all the housework is said in the heat of an argument, Uslan recommends that you say: "you know that's not true and it was a hurtful thing to say. I would like to have this conversation when we are calmer." Then try using the previous statements once things have settled down.

People at Work
"There is a line between 'my co-workers don't get it' and the law, which is the American's with Disabilities Act (ADA}," says Uslan. "The ADA says that you can receive no harassment or hostile comments in the workplace because you have an illness or disability." So if your co-workers are expressing resentment that you have time off for your illness or that you have special accommodations, that's not allowed under the ADA law. Uslan urges you to bring these types of issues up with your employer because it is their legal responsibility to handle them. Now, here is how you may deal with the people who seem to be well-intentioned but they just don't understand your illness:

Example: "Gee, you look wonderful today You sure don't look tired or in pain."
"People behave like kids with their parents sometimes," says Uslan. "We test each other, but it is not a win or lose situation; it's a test of your confidence." If this person is important to you, you have to pass the test and here is what you might say: "I'm glad you think I look good, and frankly, I am feeling better this week. As you know, though, this condition of mine has its ups and downs." You may wish to spend a few minutes further explaining FMS/CFS - it all depends upon how much time you want to invest in this person.

People in the Outer Circle
Similar to the above example on co-workers, it is in people's nature to test you. Whenever comments are sarcastic or insensitive, be prepared to respond. Don't let others simply get away with hurting you.

Example: "Well! How are we doing today?"
Perhaps someone is really wondering if you are "being all that you can be." Uslan says that sarcastic comments like this may be approached by saying: "Are you asking me how am I doing or do you want to tell me something directly? If you are asking about my health, thank you for being concerned. The truth is that after working all week long, I just haven't been able to clean the house."

Example: "I saw you playing around with your kids (or grandkids) in the front yard yesterday. Guess you must be doing much better."
Perhaps a well-meaning neighbor who does not understand that you can have good and bad days. Uslan says that if this is a good neighbor, they often just need a dose of reality: "Yes, I really enjoyed playing with my kids. Unfortunately I woke up stiff and achy this morning. This darn condition of mine always flares up the instant I overdo it."

Example: "You look great! You're just using your illness to get out of going to the party (or some other event)."
"This is a hostile statement," says Uslan. He recommends replying: "I resent that I am not using my illness as an excuse. I'm glad you think I am looking great, but I don't need to prove myself to you." Uslan claims, "Many people will calm down after that and say that they are sorry." They might even add: "I guess I just don't get it. You say you are so sick and yet you look so well." This gives you the opportunity to respond: "That's the problem I struggle with all the time. Still, I'm not feeling well, and I need to stay home and take care of myself."

Example: "You're so lucky, you don't have to work."
This can apply to patients not working or those who have had to switch to a part-time job or to a less demanding position. The point is, this person is being unsympathetic and they need to be corrected. Here's what Uslan recommends: "I would rather be working any time. I miss my old job. I miss the socialization, the gratification, the income, the health insurance. I had challenging projects and great promotions-I'm not getting any of that now."

Consider modifying the above verbal "comebacks" to suit various situations that occur often in your life. "Patients don't need to walk away from people's remarks feeling angry and hurt," concludes Uslan. If the person really matters to you, find a way to say something that will improve your level of communication and understanding with that person.

Medically reviewed and edited by Don Uslan, M.A., M.B.A., C.R.C.




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