Starting dialysis treatment significantly affects a person, both physically and psychologically. It involves large lifestyle changes that may initially be difficult to accept and adapt to. However, with the right support from their loved ones, dialysis patients can overcome these challenges faster, maintain a positive frame of mind and continue living their lives to the fullest.
Being supportive of a dialysis patient requires achieving a delicate balance that varies according to the patients’ personality. Some find it helpful to be open about their condition. Others may still be in the process of acceptance and prefer to downplay it. Regardless, staying well-informed, keeping lines of communication open and being accommodating without being overbearing form a good basis to sustain and strengthen any relationship, and that applies equally here.
When first diagnosed, it is common for sufferers of chronic illnesses – such as kidney disease – to undergo the five stages of grief: denial, anger, bargaining, depression and acceptance.
Dialysis patients tend to grieve the loss of their physical strength, freedom, social life and more, due to dialysis-related restrictions. This grief response can continue for years, which can be hard for the loved ones of these patients to accept and cope with. It’s human nature to want to alleviate their pain, but people worry about unintentionally making the problem worse.
Clear communication between both sides is the first and most important step to ensure the patient receives the support they need. To help build this, it is important to keep patience during the early stages of interaction and give them space. However, make sure they know that you are there for them and calmly let them sort through their emotions at their pace. Recognizing your presence in the process, they will talk when they feel ready. Being a good listener takes some practice, but they will appreciate your effort and it will get easier as you work towards acceptance together.
Arm yourself with knowledge
Many people do not understand the condition and the experience that dialysis patients are going through, so they might feel at a loss of words. Some may ignore the situation entirely to hide their uncertainty. Others may default to generic platitudes and unsolicited advice that despite being well-intentioned, might come off as being condescending and unhelpful. All these situations can be upsetting and stressful to dialysis patients and may strain your relationship as a result.
Therefore, it is essential that you acquaint yourself with basic knowledge on the disease and its effects on patients. This would help you understand them even if their attitudes may be harsh sometimes.
It is well documented that patients with chronic kidney disease (CKD) suffer psychologically, with depression, anxiety and in some cases, even post-traumatic stress disorder (PTSD). Some patients may feel especially aggrieved with their condition, and so, having empathy and consideration for their condition can help prevent patients from going down a psychological downward spiral.
Ignorance is common, but investing the extra effort will help you be more involved, which in turn would significantly transform the lives of your loved ones for the better. It is natural to turn to the Internet as the first source of knowledge, but it is very important to consume information critically. Make sure that the sources are verified, such as peer-reviewed medical journals or government health websites, as misinformation can be dangerous and frustrating for both parties. Qualified doctors or other health professionals can also be good sources of credible information on dialysis.
Dialysis should not be a taboo subject. When in doubt, it is always best to ask the dialysis patients themselves what they need. They can share their perspectives, what their condition means for them and how you can help. Asking may seem very personal, but most patients will understand that your questions spring from a genuine desire to support them. Speaking to other people who have gone through the same situation with other dialysis patients can also help you navigate this new dynamic.
Keeping regular routines
The biggest struggle for dialysis patients is the disruption that dialysis causes in their lives, which can lead to loss of confidence and a pessimistic outlook. To maintain good mental wellbeing, dialysis patients are encouraged to maintain their regular routines as much as possible. This helps provide a sense of normality and enables them to accept their condition with ease.
While dialysis treatments can cause patients to tire more easily and have a more restricted schedule, they can otherwise still work, travel, exercise and engage in most other activities. Most patients will appreciate not being treated like fragile glass as that reinforces a negative self-image. Their new limitations however, may make them feel guilty or uncomfortable for affecting others.
It is hence important to reassure them and find ways to accommodate their needs together.
Extra consideration does not necessarily mean making drastic changes. Suggest brisk walks instead of long runs. Invite them for two-hour high teas instead of all-day shopping sprees. If possible, accompany them to the medical centre for their appointments. Planning activities together helps them regain a sense of control over their lives and shows them that it is possible to continue engaging in what they love – it simply requires a new approach.
Embracing the joint effort
Dialysis patients must undergo numerous life changes, but this does not have to include affecting or losing close relationships. Every relationship takes effort. The presence of a chronic illness does not change that – it simply requires a little more give and take from both sides.
Many dialysis patients will continue to live long and happy lives even after starting dialysis. As a friend or loved one of a patient, the best thing you can do is to accept their condition and then help them do the same for themselves. Knowing that they have your support is a huge reassurance, can have a big impact in their journey and may make your relationship even stronger.
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