Like every chronic illness, kidney disease too has its unmet needs in management. Once diagnosed with a kidney disease not only do patients give out, but also their extended families suffer a constant worry which eventually becomes too frustrating and takes a toll on patient management. The popular management of kidney disease has been ‘disease-centric’ where healthcare providers are committed to save, salvage and substitute kidneys to prolong longevity. Although important, this is not everything. Patients frequently perceive their treatment as being imposed, punitive and out of their control.
This March, 2021, we are observing world kidney day with a theme to live well with kidney disease. More than a disease, or an organ-involved, we are focussing on a patient as a whole. We need to shift our gears from being ‘disease-centric’ to ‘patient-centric’. This will bring contentment and engage patients constructively in their treatment plan. Here I will be addressing some important aspects of a tangible plan of action to patients (and their care-givers) diagnosed with a chronic kidney disease.
1. Understanding your disease will empower you.
A disease known is half cured. Nothing can substitute your understanding of illness. Once you know your areas of strengths and weaknesses, your planning will be more realistic. Living with a long-term illness is difficult but manageable if properly understood. It’s like being with a bear in a room and do you think you have any other option than to tame it? The sooner you accept your illness, the better. Accepting your illness is not to surrender, it’s another way of accepting a challenge albeit you never wanted such a challenge in the first place.
Speak to your health care provider. The more you learn about your disease, the more you will feel in the driver’s seat rather than being a passive passenger in the roller-coaster ride of your life. You will be directly in control of your illness and the conditions that surround it. Best way to learn is to learn from authentic sources (online and offline). Ask your doctor about trustworthy websites, as not all online information is reliable. Even more effective way is to Join a support group, national organization or find a social network. This will help you in self managing your symptoms as well as engage you with clinicians in shared decision-making.
Be confident you have the right doctor. In a chronic illness, your relationship with your doctor becomes very important. You can probably be honest to your doctor if you trust him well. If you don’t have that kind of relationship, get a second opinion. Shop around. But finally settle with one good doctor (as per your assessment). It’s not necessary that a doctor good in the eyes of one patient will be perceived good by some other patient. Doctor-patient relationship is another story of sharing chemistry between two individuals. Sometimes it doesn’t work and you don’t need to feel sorry or condemning about it.
2. Boost your emotional health.
As you begin to learn more about your disease, your feelings may change. Learn to deal with your new emotions. Stop being angry with your diagnosis because it’s going to be with you for your life time. The more you feel resentful, the more ineffective shall you prove. It’s not your fault to have a disease. You didn’t earn it, it happened to you as it could have happened to anyone else. Blaming yourself for your bad health is dialling a wrong number.
Every bad news brings with it some amount of stress. The initial stress that you feel is an expected reaction but it should not snowball into constant worry and sadness which may culminate in severe depression. You can be at any stage of your reaction to illness and fortunately, all of these feelings can be managed in a variety of ways. For sure, it can’t be done in isolation. You need to define your circle of support carefully.
Don’t spend your precious energy worrying about how others view your medical condition. If you need help, be bold in asking for it. One big way someone can help is to go to doctor’s visits with you. The extra eyes and ears take the pressure off you when the news is emotionally laden and important, even if the news is good! Asking for help is not a sign of weakness. If you have been taught otherwise, unlearn it.
Your health is the most important thing to you. You don’t need to tax your health to please anyone. Saying ‘yes’ to everything may not be a good policy. It may cost you your health. Set limits and find the courage to say ‘No’! Nevertheless, you should not avoid responsibility, if your health permits so.
3. Participate in life
Getting stuck in old identities can be a great source of suffering and can keep you from seeing new possibilities right before your eyes. Create a new measuring stick. Do away with your old standards. This is where a lot of courage is needed. Rather than feeding your ego, feed your strengths. Realistically assess what you have to give up and work on letting go gracefully.
Theremust be acceptable alternatives. Instead of focusing on what you cannot do, look for opportunities to better yourself. Be realistic. Accept your limitations because of your illness. Live your life with achievable goals; small or big , doesn’t matter. Don’t feel bad if you’re to assume a smaller role. Remember, taking care of yourself as a person with kidney disease is work! In fact, it’s often a full-time job.
I understand the difficulty of living with a kidney disease but that shouldn’t stop you from living your life well. Survive and thrive ! and don’t let anyone try to convince you otherwise.
Dr Asif Sadiq Wani is Consultant nephrologist at Government Medical College Srinagar, J&K.