Defining My Life With Chronic Illness

For anyone who lives with chronic illness or has a family member or friend who lives with chronic illness, the days can certainly be a challenge. No one knows if a day will be good or bad, only that the days will be. We hear that lupus is a “chronic illness”. Most of us accept this at face value. I would like you stop for just a short time and ask yourself do you really understand what “chronic illness means”? Or do you simply accept the diagnosis of lupus, hear the words “chronic illness” and go about trying to control the symptoms?

I think if each person who has to live with lupus, or any other chronic illness actually took a little bit of time to understand those two words, they would gain a lot of insight in to their lives, the changes they might need to make to live successfully with a “chronic illness” and even gain some sort of control over, or peace in, living this new way of life.

Here are just a few ways to define chronic illness. As you read them, note the words in bold text. They are there to provide guidance and understanding of what patients of “chronic illness” live with everyday.
A chronic disease is:

• A disease that is long-lasting or recurrent
• An illness that persists for a long period of time
• A condition that is long-term or permanent, as opposed to acute, and which needs to be managed on a long-term basis
• A condition that lasts a year or longer, limits activity, and may require ongoing care
• An injury, illness or condition, which does not require hospitalization, which may be expected to be of long duration without any reasonably predictable date of termination
, and which may be marked by recurrences requiring continuous or periodic care as necessary
• Long-term or permanent illness that often results in some type of disability and which may require a person to seek help with various activities
• A persistent or recurring illness or set of symptoms

These words, if read in the wrong frame of mind can be interpreted as extremely depressing. They are not meant to be. They are meant to be realistic, motivating, and encouraging. How is that possible?
First, when you read these words you will see that most “chronic illnesses” have no end in sight. How depressing is that? If would be if that is all you focus on. But change your focus for just a minute and see that this is your new life. No one’s life is ever constant without changes. Those of us who live with “chronic illness” simply have changes that manifest themselves medically. We need to find a way to live life, just as you have lived before.

Long, long, long. You will see those words all over the above definitions. Managed on a long term basis; long-lasting. The one place it doesn’t say long is when it comes to your life. Most lupus patients live a long, though changed life. With early diagnosis and proper care long can be a good word in your life.

Recurring illness or set of symptoms? Well, I for one am glad that the symptoms are recurring and not forever changing. I have pain in my back, and I know how to deal with it. I have severe headaches and have just the medicine to take for it. I have nausea and carry Zofran to combat that symptom. I have chronic pain but have learned how much to deal with it and when to seek pharmaceutical help. I live with fatigue and know when enough is enough and that it is time to rest. I know that I cannot go out in to the sun or I will be in bed for the next few days. All of these are my recurring symptoms. Now, throw in something new, a non-recurring symptom and I am lost, confused, panicked and will probably race to the doctor immediately or even worse, call the ambulance.

Seeking help? That is one of the most difficult things for most of us to do, especially if we don’t have someone who lives with us who can help. It is natural not to want to be a burden on anyone. But reverse the situation. We would be there to help our friends and family if they needed us. Why should we be any different? Very few of us are in situations where there is absolutely no one to help. Help is there from friends, family, communities, churches, and many other organizations. Everyone needs help at some time in their life. You may think you know people who appear strong, independent and never need help. You are wrong. It is human nature to need help for different things at different times in our lives. Just because you don’t see it, or are not aware of it does not mean it doesn’t happen. Why should you be different?

The worst part of the definitions above, for me, is the word limit. I hate limits unless they are self-imposed. Add activity to limits and it gets even worse. Especially when the limits may not be known until a few hours before some scheduled activity. But even that can be dealt with. We can all find ways to enjoy most of the activities we like, and still stay within the limits our disease requires to stay healthy. For instance, if there is some family event, I try always to go to the event and not bring the event to me. Then if I tire early I can always lay down there or head to my house. I never go the first hour or two, but wait until most of the family will be there at the same time. And I have an idea ahead of time about how long I can stay. If I think I can stay two hours and make it that long, then I see the event as a success. And maybe I can even stay longer. I haven’t set myself up for disappointment and I haven’t lost out on an important part of life. By doing these three things I can still enjoy time with family. With a little thought and understanding of your “chronic illness” you will be able to determine what works best for you with regards to most events.

For other events, especially evening events, I may rest the day of the event, limiting my activities and energy expenditure. This way, I am more likely to be able to go to the event and enjoy my time there. I also plan for a slow day the day after the event. I’ve made these changes a part of my life, so the planning for me comes naturally now. I’m not even aware I am doing it.

Do I let my “chronic illness” define my life? No. Do I allow my “chronic illness” to govern my life? Maybe to some extent. But I like to view it as a natural change that has happened in my life. New things to adapt to. A maze that I must find a way to get through. An adventure of sorts. Every day I learn more about what I can and cannot do. I learn new ways to make my life meaningful for me. I adapt and change the way I do things so I can still do and enjoy the most important things in my life. I still read. I still write. I still spend time with my grandchildren in the pool. I still go out with friends. I am still me. I have definitions of what “chronic illness” is and I have my definition of what “chronic illness” means to me and how it affects my life.

You can use these definitions to define your life with “chronic illness” or you can use them to free yourself of the constraints of these limited definitions. You define who you are. Through knowledge we direct and build our lives and become the people we are meant to be. I hope you choose your own definition of who you are and the life you will have while living with “chronic illness”.

From The Life and Thoughts of
Wanda M. Argersinger, Executive Director
The Lupus Support Network

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