Monthly Archives: September 2009

Different Words = Different Treatment

I often hear people say “the journey continues” with reference to their life with lupus. On good days, I smile and think, ‘well, they are making progress’. On bad days, I find myself thinking, ‘well duh, is there any other option?’ Same statement, interpreted by the same person with two totally different takes on the same words. The words weren’t different. The person hearing the words was the same person. The only difference was the frame of mind the person was in when hearing those words. In this case I am referring to me, the person who heard these same words uttered at different times in my life. Most of the time I have a positive interpretation of the words and think the one who spoke them must be doing well. On rare occasions though, like today, when it takes all of my energy to keep going when the pain is unstoppable and courses through my entire body as if waging war against an unknown enemy, obliterating everything in its path, well on days like today, I respond with the “duh” comment.

What could make a simple statement mean two entirely different things to the same person? If it could happen when I hear these words, how often are other things we say as lupus patients misinterpreted? And if a misinterpretation occurs, is it likely to harm us or our medical treatment and care? It appears to me that so much depends not on the words we choose to speak, or the person we speak them to, but rather the frame of minds that both parties of the conversation are in at that particular moment in time.

We all have good days and bad days. On the good days, we are calmer and more likely to hear things positively. On bad days, the opposite is likely true. It may be that we, as the speakers, are vulnerable to the exact same thing. Though we use the same words, our tone of voice is more positive when we are feeling well, and more than likely it is more negative when we are experiencing pain or some other physical aspect of our disease.

How then, can we communicate properly, be understood precisely, and treated correctly, when so much depends on things out of our control? As with most conversations that are vital to our health, well being, and relationships, it is best to keep the negative tones out. Leave them out of your voice. Leave them out of your words. Leave them out of your emotions. I realize this may be very difficult to do, but a lot can depend on how you display your emotions. Take one simple statement and imagine how it could be interpreted depending on the tone the person uses when they speak the words – “I’m doing okay.” Wow! That could be interpreted as defeatist. It can also be interpreted as realistic. And it could just as easily be interpreted as positive, if the tone of voice is positive when the words are spoken.

We as the patients have to learn as many ways as possible to explain what we want the other person to understand. Some days one set of words may work while on another day the same thing would require a completely different set of words. It is our responsibility, us the patient, to ensure that we are communicating in the best way we know how. Try to speak – emotion free. Choose the best words you can to relay your thoughts. Draw pictures if necessary, that sounds strange, but when dealing with medical issues, it often helps. When all else fails, ask the person you are speaking with if they understand what you said. In most cases they will, and if not they will ask you for clarification. With practice, this gets easier. Remember always though, that even when you are doing the best you can to communicate, part of the understanding lies with the person you are speaking to and their understanding, just as your communication, can be influenced by emotions, stress, and communication skills.

Handling The Stressors In Your Life

Most of us who live with chronic illness know that stress can be a key factor in how we feel from day to day. What many of us fail to realize is that there really is something we can do about stress in our lives. This particular blog is dedicated to Mary Ellen Neal, A.R.N.P. from Gulf Breeze, Florida, who taught a dear person in my life that stress does not have to kill or wreck your life. That you can control a lot of the stress in your life, and thus make your life a better place to be.

According to Mary Ellen, we all have stressors in life. Isn’t that the truth? But stop and think for a minute about your stressors. Look at them. Examine them. Learn where they come from. Be aware of how they affect you. Then decide, are they a stressor that you can do something about, or stressors that you cannot control? Once you have that answer you are on your way to controlling or eliminating the stressors in your life, and possibly you are on your way to controlling or even eliminating some of the flares you experience.

Note: The following should be taken as examples only and not construed as fact. Most things in our life can be altered, changes, or eliminated. Understand that everyone’s life is different so no representation of fact with regards to any individual’s particular situation.

Examples of stressors you cannot control are your children, work (unless you are willing to quit or change jobs), spouses (though you can talk to them and hope they can lower the stress level they add to your life), medical problems (for the most part), medications (though you may need to change from one medication to another with less side effects), money and bills (though in many cases we can keep from creating new bills), legal issues, and the daily tasks we must all do.

Examples of stressors you can do something about include your extended family, acquaintances, casual friends, tasks you take on for others (you can be your own worst enemy), shopping (it has to be done, but there are many ways to change how it is done), being perfect or believing you have to be, exercise (don’t eliminate it, but if it causes stress change your form of exercise), holidays (you can’t eliminate them, but you can change how you approach and celebrate them), meals, house work, travel, most relationships, food, schedules to some extent, and all the non-essentials in your life.

Some of the stressors that are stated as being under your control, may cause you to stop and say “no way”. I can’t control my family. I can’t control friends. I can’t, I can’t, I can’t. First look at your approach. If you think you can’t you have immediately doomed yourself and the outcome will be exactly what you expect. You can and should explain to the people in your life what your needs are with regards to your illness and well being. If they don’t understand, or refuse to comply with what you need, then it is up to you to take control of the situation. Set your boundaries and then do what you have to do to enforce them. This may sound strange, or even a bit strong, but you have to be the one who is control of your life, your illness, and the stressors you can control.

Making the changes necessary to control, change, or eliminate the stressors in your life that you have control over is never an easy process. But, the results are certainly worth the effort you put in to it.