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"The Challenges of Being Chronically Ill"

by Anne-Marie Vidal

Life is a challenge for anyone. For the chronically ill, it is a daily test with mixed and sometimes amusing results. The following are some of the typical experiences that those with a chronic condition may have in common.

1. No matter what your chronic condition, at least a third of the people you know believe they know the cure or the best treatment. People with "the answer" will not be deterred by minor considerations such as not knowing you or your general health status. They have knowledge that they feel you need to know. That you may not share their feeling often does not occur to them. Living within your energy restrictions is not going to allow you to seriously answer or to try to be nice to everyone with a "cure." You have to learn to shrug it off or smile politely. Do not stress yourself giving long explanations unless you think that the relationship with the person is important

2. We have too many doctors' appointments with too many different doctors. How do we make sure that all these doctors get the same information and are on the same page regarding our health status? We must take responsibility for that by keeping a diary that includes medications, symptoms, and pain issues. We know our situations best and can provide copies of any changes in our health.

3. "But you look so good!" I am sure that all of us have heard this more times than we can count. Some of us will feel compelled to give a detailed answer regarding the difference between looking good and feeling good. But you should consider if the person making this remark would understand what you are saying and listen. One patient recommends, "If I only felt like I look." Another wisecracks, "I have a personal make-up artist and cosmetic surgeon."

4. "You are too young to be in so much pain." Don't worry about this one--it will be soon be followed by, "Well, of course you have 'a few aches and pains'--you are (almost) 40!" People who are this insensitive are not listening to you or understanding your particular situation. If this is someone who you were once close to, it may be time to re-evaluate the relationship.

5. Comparisons! The standard one runs something like this: "My next door neighbor's cousin has an Aunt Betty who has __________ (fill in the blank). And they are doing so much better (than you)." Now is a good time to remember why you do not leave sharp objects or firearms lying about unsecured. The temptation to do bodily harm to these jerks can be overwhelming. But the energy it takes may not be worth the challenge. Only explain the issues of co-existing conditions, years spent getting a diagnosis and all the other complicating factors if you choose. You may instead decide that the energy would be better invested in a nice warm bath surrounded by aromas you enjoy and you would be right. No one says that the chronically ill are sentenced to suffering fools; you can choose to vacantly smile, shrug and wander off. If you are a very polite person, you can answer "how nice for them."

6. Validation. Our conditions are seldom proven by an X-ray or a blood test. They are often conditions that have a variety of symptoms. Because of this and the lack of research we find ourselves being asked things like, "You'll get better won't you?" Most people who make this remark mean to offer hope; they have no idea how absolutely depressing this remark can be to a person battling the wear and tear of a chronic illness. I used to try to explain the difference between a chronic condition and an acute condition. After my 1249th attempt, I quit. Sometimes I say, "Chronic conditions don't disappear without research into a cure, and FMS and CFIDS are low budget priorities." Or I flat out say that I am raising money for an organization dedicated to advocacy. Hit people up for cash; they will leave you alone.

7. Understanding and support are never-ending battles. Initially we struggle to understand our conditions and to accept their effects on our lives. That is almost a daily event and during that struggle we must work with friends, family and others for their help. Sometimes we will gain that understanding, but it is not going to be consistent; it is perfectly normal that a loving relative will seem to understand one week and not the next. Their change in attitude may result from a news story or article misrepresenting our conditions. There is, as you already know, a lot of misinformation out there. You have to decide, when confronted with this seeming shift in attitude, if you want to extend yourself to discover what is behind it. Remember that you are not required to do that. It is your choice whether or not to take on the burden of these discussions and not your obligation. Some days you may have the energy and the fortitude for these discussions, other days you might simply say, "I am not feeling that I can argue the points of that article right now, butů" You can offer another article or promise to discuss this with people another time. You can also invite the person to attend a support group meeting with you and meet others with FMS.

8. Getting Older Before Our Time. Ever go to the doctor's office or hospital and notice that everyone else there is not just 10-15 years older than you but often 20 years older? This can be a little shocking, but you can minimize its affect by reminding yourself that sometimes very young people also need surgery and physical rehabilitation. One CFIDS patient who suffered an injury wrote me the following: "I was 47 at the time that time the nurse came to my home and asked for me. She was surprised when I told her I was the patient. Her comment was "from everything that is wrong with you, I thought I was coming to see a 90-year old"! The arm and shoulder got better but the chronic pain never went away - I had so many tests and so many nerve blocks and trigger point injections that my medical charts read as that of a 90 year old!" Here is another patient's experience: "If I say, "My aching bones..." when I get up, people laugh because they think it's a joke. Or when I say that I'm not able to lift something heavy, they look at my strong build and say, "Yeah, right!" I feel completely guilty asking for help out to my car with groceries. I would like to get a disabled parking permit but I see the way people stare at me in disgust when I park in one on occasion." The world seems to accommodate the fully functional, the young and the healthy. In this millennium, it seems that people are dedicated to living and working at hyper-speed. We are precocious in an age-denying and defying world. We are having the experiences that are usually associated with senior citizenship. Try to keep a sense of humor; you are going to need it. This is a good time to remember that feeling guilty for being the way we are is useless and draining; the insensitive and the unfeeling are not likely to share our capacity for guilt. Try to remind yourself that you are not the problem. And besides, you at least can fully appreciate "stopping to smell the roses" (if you aren't allergic to them).

Anne-Marie Vidal is a patient and advocate who has several chronic conditions, among them CFIDS, Fibromyalgia, Epilepsy and Arthritis. Many of the anecdotes that she relates here are based on the experience of CFIDS, FMS, and MCS patients who have written to her regarding their experiences.