Talking About Dialysis
Being diagnosed with end stage renal disease (ESRD) can open up a floodgate of thoughts, feelings and emotions. As the “muddy waters” settle, you may begin to think about how you can live your life with ESRD. You may wonder how your dialysis treatments will affect your life—and the lives of people you love. You need their help, and you also want to remain as independent as possible. So how do you talk about dialysis? How do you ask for their help? How do you “work it out” together? And where do you begin?
Empower yourself and others
Speaking with family, friends and coworkers about the new realities of life on dialysis can be challenging. Here are a few helpful tips to help you feel more confident and empowered:
- Learn all you can about ESRD and the different dialysis treatment options. Speak with your doctor, read the special sections of this site and check out educational tools and resources.
- Compare your treatment options and understand the differences between them. Consider the physical, emotional and the practical aspects of the dialysis treatments you are considering. What happens during treatment? How long and how often will you be treated? How will you feel? How will it affect your ability to live your life? As a partner? A parent? A coworker?
- Learn all the ways you can help yourself. Today, it’s very possible to remain vital and independent while on dialysis. What can you do to help with your treatment? What adjustments do you need to make to your diet and lifestyle? How can you still thrive?
- Think of how others can help you. While you can still be independent, there may be times when you need to ask others for help and support. Will you need someone to help drive you to and from a treatment center? Will you need help with everyday chores? Think about what you are asking others to do. How will it affect their lives? What sacrifices will they need to make?
- Speak with a social worker for helpful suggestions about adjusting to life with ESRD. Ask about how you can speak with your loved ones and coworkers and engage their help. If you’re having problems with your feelings and emotions, speak to your social worker or another counselor who is trained to help people cope with the emotional impact of chronic medical conditions. If you are using Fresenius Kidney Care for your dialysis treatments, feel free to reach out to one of our clinical social workers.
- And finally, be prepared to listen. Really hear what your loved ones are saying and see what they are feeling. Listen to their thoughts, hopes, suggestions and concerns. After all, a conversation is a two-way street and everyone deserves to be heard and understood.
Telling your family
Today, “family” can mean many different things. However you define your modern family, they are probably your most cherished loved ones and the people who will become partners in helping you thrive while on dialysis.
Your spouse, partner or significant other
If you have someone with whom you share your life, you may want him or her to be your primary support person, especially if you have at-home treatments. Because both of you will play an active role in caring for your health, it’s helpful to think of this person as your care partner.
You’ll want to discuss how dialysis treatments will affect your everyday life together. How will you split up your household responsibilities? How will you care for your children, if you have any? How might your roles change?
Naturally, you’ll also want to discuss how your treatment will affect your sex life and ability to care for each other. It’s important to know that while dialysis may affect your sex life, it doesn’t put an end to it and you’ll want to learn about all the ways you can still be intimate.
And finally, how can your partner help you while you have dialysis treatments? If you choose in-center treatment, do you need them to drive you to and from treatments? If you choose at-home hemodialysis or peritoneal dialysis treatment, can they help you with at-home care? Will your partner need to take time off from work to help you? Will you need to find someone else to help out when your care partner is unavailable?
Talk about everything and anything you think will be different once you are on dialysis. Being frank now can help set your expectations and avoid any misunderstandings or hurt feelings later.
Your children
If you have children, you’ll want to give them as little or as much information as is appropriate. Every child is different, so you’ll need to gauge their reactions when you speak with them.
With very young children, it is usually best to keep it simple. Describe your condition in basic, understandable ways and tell them how everyday life will change—and how it will stay the same, too. With older children, teens and young adults, you may wish to explain things in more detail. But in either case, you’ll want to reassure your children and keep the discussion positive. Life will be different, but it doesn’t have to be a bad thing or a sad thing. Help them learn about your condition and how your treatment can help keep you healthy.
Depending on how receptive they are, you may wish to empower them by giving them some responsibility in your care. Above all, let them know all the ways you can still be “there” for them.
Other family members
Whether you live with family or live alone, other family members such as your siblings, parents and grandparents may be ready, willing and able to help out. Family members who have free time during the day may be able to help take you to and from treatments if you need assistance. Depending on your needs, they may also be able to help with at-home dialysis, care for young children or help with the household errands.
Getting the word out to friends
Sometimes, friends are like family. In addition to offering you moral support, they can offer practical support—if you need it.
Reassure them that even though you have kidney disease, you’re still “you” and you can still do many of the same things you did before, with a few adjustments. It’s also helpful to remind them that you still want to stay connected and you still want to be included in social events, get-togethers and other social gatherings.
If you choose to share your news on social media, be selective in how you spread the word. You may wish to form different “groups” on Facebook—one group for close friends and relatives who support you—and another group for a larger circle of friends, to keep them current on your status. At all times, beware of scammers who can pick up on social threads and offer you “miracle” cures or dubious treatments and services. To hedge against this, you may wish to make your posts private or viewable by friends only.
Whatever you do, be prepared for many different responses. Remember that everyone has their own lives and their own problems. Their response or lack of response doesn’t necessarily reflect their feelings about you.
Informing your employer and coworkers
Even though you have ESRD, it is still possible for you to continue working. And like so many people with ESRD, you may want to and even need to work.
While you are not legally obligated to disclose that you have ESRD to your employer, you may wish to do so if you find that you will need to adjust your work hours to accommodate your treatment schedule.
Whatever you decide to do, the important thing is to find the sweet spot that allows you to balance your dialysis treatments and your work life. First, consider how your treatment schedule will affect your job and vice versa. For example, if you work during the day, you might want to ask your doctor if you can dialyze at night in the comfort of your own home via peritoneal dialysis or hemodialysis. Or you may wish to opt for nocturnal hemodialysis at a treatment center.
If you find that you must have your treatments during the times that you would normally work, you may wish to ask if your employer will consider a flexible or part-time work schedule. In some cases, your employer may be able to create a new job for you that works with your schedule and still benefits the company.
If you’re unsure about how to balance work and dialysis, speak with a social worker who can provide assistance or connect you with resources or other counselors. If you have concerns about insurance coverage and are using Fresenius Kidney Care for your dialysis treatments, feel free to speak with one of our financial coordinators. They can contact your employer and help coordinate your insurance or disability coverage, if you need to take a leave of absence. Our financial coordinators can also help answer any questions you may have about COBRA applications or maintaining COBRA coverage.
Above all, know your rights. Learn about laws that protect workers with disabilities such as the Americans with Disabilities Act [ADA], the Family and Medical Leave Act [FMLA], the Ticket to Work and Work Incentives Improvement Act and Social Security Work Incentive Programs. If you’re unclear about your employment rights, you may wish to contact an employment lawyer or ask your social worker to help connect you with other appropriate resources.