Feeling in Control
“I cannot control the direction of the wind but I can control the sail.” — Author unknown
Do you ever feel like your life has taken a path of its own and you have no control? Dealing with any chronic illness can be a challenge. Having a doctor tell you that you have chronic kidney disease (CKD) can be a shock—even if you knew it was coming. It may sound like the end of the world, or at least the end of the world as you know it. Kidney disease is a lifestyle change. But, even if your kidneys fail, it’s not the end of your life. And, you have more control than you think!
If you are in crisis and need help right away, call the VA crisis hotline at 1-800-273-8255. Or, you can chat confidentially at Veterans Crisis Line or text 838255.
The keys to a good life with kidney disease are to keep a positive attitude, learn all you can, and take an active role in your care. You’re getting a good start right now by visiting this site.
Your VA Social Worker is a Resource
At the VA, you have access to a social worker through your primary care team or the kidney clinic. All U.S. dialysis clinics and transplant programs—even those that are not part of the VA—must have a professional social worker, too.
The social worker has training to help you cope with your feelings and adapt to your treatment. He or she can help you with community resources and your benefits and payment questions. Get to know your VA social worker. Talk to him or her about what sorts of help you need and resources that are available from the VA or other agencies. Asking for help is the first step to getting it.
What Feelings are Normal?
It’s VERY normal to have strong feelings about kidney disease. You may feel afraid, worried, depressed, or angry. You might even have all of these feelings at the same time. These feelings may occur when you first learn of your illness, if you have a health setback, when you need to start treatment—or any other time. Your VA care team is here to treat YOU—not just your illness. Your emotional well-being is just as vital as your physical well-being. Your VA social worker and other members of your care team can talk with you about your feelings. And, the VA has many mental health resources that can help you. Start with the Mental Health Website
There are special VA websites for help with issues like:
You CAN Have a Future
The most important thing to know is, you CAN have a future with kidney disease. Your kidneys aren’t working right. But, you are still you. You can choose to keep following your dreams. These photos are of real people with kidney failure who’ve had good lives on dialysis for decades.
Attitude
“The last of the human freedoms is to choose one’s attitude in any given set of circumstances.”
- Victor E. Frankl, Holocaust Survivor
You may not always be able to choose what happens to you in life. But you can always choose how you think about it. How you look at things that happen to you is a frame—like a frame on a picture. That means that you can choose to re-frame how you think about something. Re-framing is a vital choice you can make to have a good life.
You Can Look at Things in More Than One Way
Here is an example of what we mean by “re-frame.” Many things can be looked at in more than one way. Like this picture. Maybe you’ve seen it before. Can you see a vase and two faces? (HINT: The vase is white. The faces are black.) Both the vase and the faces are part of the picture. You can choose to focus on one or the other. Or, you can look at both. It’s up to you.
Stubborn or Persistent?
When we choose to think about things in a different way, it can help us to feel better about them. If this was your little girl or granddaughter, would it help you more to think of her as stubborn or persistent? The look on her face is the same either way. But, you may look at her in a new way when you give her behavior a more positive label. This is re-framing in action. Re-framing can help you see things in a more hopeful way.
Re-frame kidney disease
How do you re-frame what seems like a very bad thing, like kidney disease? It may help you to know that treatments for kidney failure are very different today than they were years ago. In fact, until the 1970s, there were not enough dialysis machines to help everyone who had kidney failure. Many people with kidney failure died. The VA began to offer dialysis in 1964 and transplant soon after—and it is still here for you today.
Now, there are enough machines for all. The treatments are more comfortable and there are more ways to do dialysis than ever before. You can learn more about the ways to do dialysis by visiting the Treatment Room. There are newer drugs that can help kidney transplants last longer, too.
So, you can choose to look at kidney failure as a terrible fate. Or, you can choose to be grateful that you live at a time when science can help you to have a good life.
Living a Good Life
Nancy was 19 years old when she started dialysis in 1966. Today, she still works full-time as a nurse. She’s a grandma of two. And she’s still skiing! Over the years, Nancy has done many kinds of dialysis and she is now on her fourth kidney transplant. She’s having a good life after kidney failure—and you can, too.
Try Not to Look Backwards
It’s very normal to want to turn back the clock or step into a time machine and go back to a time when you didn’t have CKD. But, when you can point yourself into the future, you’ll have a better chance for a good life. There can be good times ahead of you—not just behind you.
We all look back sometimes, but try not to dwell on the past. When you catch yourself saying things like, “I wish I had…,” or, “if only I would have…,” those are clues that you are looking backward.
You Have Coped Before—Use Those Skills
You haven’t gotten to the age you are without facing some losses in your life—a job, a friend, a loved one, a home. You have coped before and made it through some tough times. If you need help coping, talk to a social worker, chaplain, or therapist. The VA has individual, group, and other therapy services to help you. Don’t be afraid to ask for the help you need to feel better. You might want to visit the VA mental health website.
If you see a therapist now, talk to him or her about kidney disease and your feelings. If you don’t have one but would like to see one, your doctor can refer you. Just ask.
Find Support—In Person or Online
Did you know that about 1 in 9 Americans has CKD? You are not alone. Having someone to talk to can help you feel less alone. There are other people in the same boat—in your town and around the world. Ask around. There may be a support group in your area. If not, maybe you could start one. Also, look online. The internet is there for you 24/7. Check out organizations like:
- The American Association of Kidney Patients
- The Renal Support Network
- Medicare*
- The National Kidney Foundation
- Veteran’s Affairs
TEAM stands for “together everyone achieves more.” In your life, support may come from a spouse, child, parent, sibling, friend, or neighbor. Be sure your care partner’s needs are met, too, if you have one. Your VA social worker can talk with your care partner and help link him or her to services in your area or Caregiver Services at the VA.
* Links will take you outside of the Department of Veterans Affairs website. VA does not endorse and is not responsible for the content of the linked websites.
Coping
- Each U.S. dialysis and transplant clinic is required to have a:
Not scored A professional social worker must be part of a dialysis or transplant team. If you get your health care from the VA, you can also have access to a social worker as part of your VA care team.
- The most important thing for you to know about chronic kidney disease is:
Not scored Some people have lived for decades after their kidneys failed. If your kidneys stop, it doesn’t mean you have to.
- You may not get to choose what happens to you in life, but you can choose:
Not scored Choosing to look at things in a different way can help you feel more hopeful.
- “Reframing” means that you:
Not scored Reframing can help you see the same thing in a new light.
- You have a better chance of a good future if you look:
Not scored If you choose to look toward the future, you may find that it is easier to make a good life for yourself.