It can be difficult to accept the news of a lifelong chronic disease. It may be easier to understand the diagnosis of appendicitis when a procedure is needed, or medication to treat a cold, or the need to use crutches for a couple of months because of a broken bone. But accepting a disease like asthma, diabetes, lupus, pemphigus, or pemphigoid may be more difficult. Managing your life first begins with a strategy to live with your medical condition.
Here are some strategies that may help you cope with and manage a medical condition.
It is normal to feel surprised, have questions, and even resent a diagnosis of a long-term medical condition that requires management. Accepting a diagnosis, learning about your illness and taking responsibility to manage your condition will help you gain the needed skills to care for yourself.
Understand your condition:
Learn everything that you can about your medical condition, including signs, symptoms, diagnosis, treatment, specialty care, medication, insurance, flare-ups, behavioral health care, nutrition, exercise, and on-going research. It may be helpful to and keep a journal of these details.
Make your doctor and medical specialists your partners in care:
Partner with your doctor and work with them to include the appropriate specialists for your care in terms of treating and managing your condition long term. Keep a journal and share it with your healthcare team regarding questions that you might have, and write down courses of action that are being taken to address those questions. This will help with the coordination of care between you and your specialists.
Make a healthy investment in yourself:
Invest in the time now to make healthy lifestyle changes that your healthcare team recommends. Taking steps to improve your life in these ways may be beneficial in the long run. I was not only very weak, but I also felt stressed during my initial treatment of bullous pemphigoid (BP). In addition to my medical care, my doctor recommended short walks, gentle yoga, meditation, and exploring my faith. I began to feel better and stronger after following my doctor’s guidance.
Make it a family affair:
While making lifestyle changes to manage chronic conditions like pemphigus vulgaris (PV) or BP, it’s important to keep friends or family in your life. Most likely they’re concerned about you and want to be in your circle of relationships to support you. Let friends and family know how they can help you.
Manage your medications:
Knowing about the medications that you take, possible side effects, dosage, and how to take them is important. Always keep a list of this information and change it anytime your doctor changes your prescriptions. Also, keep the name and number of your pharmacist handy should you have questions.
Manage your behavioral health needs:
Managing a serious illness or chronic health condition can feel overwhelming. Share with your doctor if you’re having a tough time and discuss the advantages of counseling, medication, and other therapies. There are many computer and phone apps that can help with memory, lists, or brain fog. Check out this article on The Mighty for more information.
The International Pemphigus & Pemphigoid Foundation (IPPF) is a rich resource that offers a wealth of information, including coaches, library, webinars, support groups, research updates, conferences, and social media. Visit https://www.pemphigus.org/ for more information.