A Message to Well People

There are people, even family members, that don't understand because I laugh and have fun, that there is something seriously wrong with my body that no cure is available. It's one reason, I am fighting soooo hard to get Shasta trained and certified as my Service/Therapy Dog.
Well for those healthy people that have family or friends that are in the same position as me, I have a message for you.

A letter to a well person

To whom it may concern,

Having and living with various chronic health conditions, as with any invisible chronic illness means that your life as you once knew it is changed. Just because you can't see those changes doesn't mean they are not there and felt by us.

Most people don't understand these diseases and cannot imagine what living with chronic illness’ means. With the hope that there are some who wish to understand, these are some of the things I'd like you to know about us.

Please understand that being sick doesn't mean we are not still human with all the same emotions that healthy people experience. Some of us must spend our time carefully so that we conserve what little energy we possess. If you visit we may not be much fun, but we still love and appreciate company. Some of us worry about our jobs, schooling and families. Most of the time we'd like to hear what is going on in your life as well as sharing our lives.

Please understand that one can be happy but not healthy. When you have the flu you feel fairly miserable, but we've been ill for years. We can't be miserable all the time; in fact most of us work hard at not being miserable. So when you speak with us and we sound happy, it means we are happy. That's all. It doesn't mean we are not sick, in pain and extremely fatigued, or that a miracle cure has been found and we are all healthy once again. Please don't say, "Oh you're sounding better!" We are not sounding better, we are sounding happy. Feel free to remark about our happiness. Just don't assume that it means we are better.

Please understand that being able to stand up and participate in an activity for 15 or 20 minutes doesn't necessarily mean that we can participate for 30 minutes or an hour. It's quite likely that doing those 15 minutes has exhausted our resources and we may need time to recover. Remember the last time you played a swift game of tennis or softball. You couldn't repeat that feat over and over again. This applies to every thing we do.

Please understand that chronic illness is unpredictable. It's quite possible that one day we are able to walk to the park, or shop in the mall, while the next day we may have no energy at all or that we are in extreme pain. Please don't say, "But you did it yesterday." If you want us to do something, just ask and we will tell you if we are able. If it is necessary to cancel an appointment with you at the last moment, please don't take it personally. There are days when we feel great and all of a sudden that changes and the pain or fatigue is overwhelming.

Please don't ask us how we got our diseases. There are many variables to consider. Some of us may have been born with a predisposition of the disease or condition that certain factors, such as severe trauma, for example could bring to the surface, or inherited. Sometimes, one condition leads to another and eventually they multiply. Our immune systems tend to lower, which brings forth even more conditions. If we wish to share our medical history with you, we will, but don’t play doctor with us and tell us we do not need all the medication our doctors have prescribed to us. Nor don’t tell us what we should do to make it better, such as run around the block each day. We know our bodies and pacing plays a big factor in our lives. Please don't be afraid to hug us, kiss us or hold us. Not all diseases are contagious and you will not contract our condition by supporting us or loving us. We need that as well as a normal, healthy person and sometimes, even more.

Please understand if we tell you that we have to sit down, lie down or take our medications that we have to do it now. Chronic illness doesn't wait for a convenient time. It does not feel good to have to stop what we are doing to tend to our health. Remember that we didn't ask for this. At times you may think we feel sorry for ourselves, but at times we mourn for our lives before our illness, when we were free to pursue all our dreams and hopes. Think about the way you would feel if your life was drastically altered and you needed to give up your way of life and learn a whole new way to live. Be patient with us and try to understand. Don’t pity us, for we do not want your pity. We are ‘normal’ in our own way and only ask that you accept us as we are.

There is a wonderful saying, “Friends are people that know all about you…and love you just the same!”