How to Live with a Chronic Disease Diagnosis
Did you know that six in ten adults in the United States live with at least one chronic illness – and four in ten adults have two or more? Chronic illnesses, including Parkinson’s disease, Alzheimer’s disease, and epilepsy, are broadly defined as long-term health conditions that may not have a cure.
If you’ve been diagnosed with a chronic illness, you may feel very isolated and scared for your future. One of the most important things you can do for yourself is also one of the hardest: accept that your life is now changed. Accepting this “new normal” is the first step towards reclaiming your life. It’s not an easy task, but you can reconcile the life you want with the life you have.
It’s important to know that, while life may present new challenges, you can live fully and happily. Have faith in yourself and your ability to adapt to your new lifestyle. Here are some common-sense strategies, adapted from an ALS News Today article, to help you live your best life, regardless of your diagnosis:
1. Follow Directions
Choose the right health care provider and follow the directions they provide to you. Your neurologist is an important part of your health care team, and it’s important that you, your family, and your caregivers are involved in the development of the plan of care for your chronic disease. Dr. Deborah Boland of Be Mobile Neurology has a passion for improving every patient’s quality of life, and her goal is to lead the movement back to patient-centered, individualized care.
“Because the majority of neurologic diseases do not yet have a cure, we focus on developing a personalized treatment strategy for each patient, allowing them to live a fuller life despite a neurodegenerative disease process,” said Dr. Boland.
However, your plan of care won’t result in positive outcomes if you are not following it! Taking your medications and completing your therapies as prescribed will keep you healthier in the long run. Managing medications might be a challenge at first but missing a dose or taking it later than usual might have significant effects on your health, such as a freezing episode.
2. Designate a First Responder
Choosing an emergency contact – your own personal “First Responder” – is very important. This person needs to be someone trustworthy and reliable, regardless of whether you choose a friend, family member, a co-worker, or a caregiver. Make sure this person understands your condition and knows the medications you are taking, so they can communicate that information to medical professionals, if ever there is an emergency.
You may want to include your “First Responder” in your medical appointments, so they are familiar with your plan of care and can help you capture all of the details. Dr. Boland said, “At Be Mobile Neurology, we are always willing to ensure our plan of care also includes the family and caregivers.”
Also, if you are still working, consider telling your co-workers or other people in your life about your illness. Doing this will not only allow them to understand what is going on, but it may also help to keep you safe. If you have a medical emergency, you want people to step in and help.
3. Be Organized
It’s easy to feel overwhelmed by your illness and confused about how to best take care of yourself. Getting organized will help you manage your health.
If you are finding it difficult to keep track of your medication, there are several tools that can help you. There are small plastic pill pouches, available at drugstores or online, that allow you to organize your pills and easily carry them with you. You can find smartphone apps like Medisafe Medication Reminder or you can buy an automatic pill dispenser to make sure that there are no missed medications or accidental double doses. Medication dosing and consistency are critical components of your treatment plan.
Also, make sure to keep all paperwork, such as medical records, prescriptions, and billing or insurance documents, that has to do with your chronic condition organized. When deciding how to organize your paperwork, consider using a three-ring binder or file folders, which are easy to transport, store, and update. It’s not only important that the system is easy for you to use, but that your caregiver or emergency contact is also familiar with it.
4. Use Trusted Sources for Information
Knowing your condition is vital to the management of your illness – and can also help you feel more empowered. The better you understand your condition, the better equipped you’ll be to recognize what’s happening and why. It’s important that you’re not only committed to following your place of care, but you are an active participant in its development.
If you have specific questions about your condition, ask your physician. Dr. Boland encourages her patients to keep a diary to record symptoms, trends, or insights they have as a tool to help manage their conditions. “In order to guide my patient toward optimal treatment, the most important thing is for the patient and their caregivers to do is to accurately share and report information,” she said.
You also can look for information beyond the doctor’s office. You may be interested in researching treatment options or connecting with local nonprofit organizations that specialize in your condition. Just be careful to use trusted sources while you are gathering information, especially online. There is a lot of misleading or incorrect information on the Internet, and Google isn’t searching for verified and credible sources for you. Resources like HealthNewsReview.org and Snopes.com are handy for fact-checking.
5. Get the Most Out of Your Appointments
When you are newly diagnosed with any illness, but especially, a chronic condition, there can be a lot of information for you to process. It’s a good idea to take notes during appointments with your doctors and to ask for clarification if you need it. Also, include your “First Responder” or your caregiver in your appointments, so they are familiar with your plan of care and to help you capture all of the details.
In preparation for your first neurological visit, make sure to write down the symptoms you are experiencing, the medications you are taking, your allergies, any previous illnesses you have had, and family history of disease. Complete any new patient paperwork, and provide your neurologist with prior medical records, such as physician notes, pertinent imaging, and neurology tests and labs.
Unlike other neurologists, Dr. Boland will visit you at your place of residence. The initial consultation will last for approximately 1 hour and 30 minutes, significantly more time than you’d receive in a traditional office. The visit includes an extensive discussion of your neurologic history and a comprehensive neurologic examination. At the end of the consultation, Dr. Boland will provide you and your caregiver with an assessment, and together you will determine a plan of action.
For follow-up visits, make sure to have an up-to-date medication list, any possible side effects you’ve experienced, a diary of symptoms, any concerning changes in cognition, behaviors, or mood, or any new changes in health.
6. Have Faith in Yourself
Dealing with a chronic disease diagnosis can be hard, and the changes that it will bring to your life requires some self-compassion. Physical changes may affect your appearance, your mobility, or your ability to work. With these changes, you may feel a loss of control, anxiety, and uncertainty of what lies ahead. Know that your feelings are normal and be kind to yourself as you learn to navigate them. Every day, other people with the same diagnosis as you are living happy and fulfilling lives – and you can too.
Believe in yourself and in your ability to live a life you’ll love. Focus on what you can do and let go of what you can’t. Get rid of harmful habits and replace them with healthier options. Dr. Boland is a proponent of the Cleveland Clinic’s Six Pillars of Brain Health, which you can watch here, and how lifestyle changes like a healthy diet, good sleep, and exercise can help to optimize your overall well-being. Consider this an opportunity to make your physical, emotional, spiritual, and relational health a priority.
7. Ask for Help
As your disease progresses, you may need help with everyday tasks, such as self-care, getting to appointments, shopping, or household chores. While it’s often difficult to ask for help, know that your friends and family members want to support you, however they can. Make a list of trusted people on whom you can depend to help when you need them.
You may also need help when it comes to handling your emotions. If you are feeling depressed or unable to cope, please reach out. Your neurologist can connect you with local support groups or counselors that can give you strategies to manage your emotional response to your diagnosis. Many nonprofit organizations and hospitals run support groups, both that meet in person and online, allowing you to meet and learn from other people dealing with the same illness.
Sometimes there is a need to hire in-home help, especially to assist your family caregivers. You can contact licensed home care agencies in your area to see if the services they offer fit your needs and budget.
Also, a nonprofit organization for your condition may be able to provide you with financial aid or necessary medical equipment. Some volunteer groups even offer supportive services, like caregiving or assistance around the house and garden. There’s help available, so don’t be afraid or embarrassed to ask!
8. Don’t Let Negative Feelings Get You Down
Fear, anger, and sadness are all normal and natural reactions to a chronic disease diagnosis. But, it’s important to your overall health that you work through these emotions – to let go of the negativity and to focus on the positives in your life.
Dr. Boland encourages her patients to practice a daily mantra of “three good things.” Every night before you go to sleep at night, think of three good things that happened and write them down. Spend a few minutes reflecting on your list and how it makes you feel. By practicing the identification of the good things in your life, you’ll begin to focus more on what brings you happiness.
Other mindful based practices, like meditation or yoga, are also effective in reducing stress and increasing joy in your life. Just 10 minutes a day of breathing exercises can help reduce stress and lead to other health benefits. Take time to listen to music, relax, and try to think of places and feelings that make you happy.
9. Be Adaptable
As you adapt to your diagnosis, understand that you may need to adjust the ways you do things. Depending on the severity of the disease, your roles in life and your priorities may change, affecting your sense of self and identity. Your attitude and the way you approach these changes can make a significant difference in the quality of your life. The goal is to take a proactive, problem-solving approach to the challenges you may have.
Dr. Boland recommends making a list of the items your condition prevents you from doing and another list of how you can work around each limitation. This exercise will help you develop a plan of action – and take some control back for yourself. Studies have actually shown that people with chronic disease who use active coping strategies like this reported more inner peace and life satisfaction.
If your mobility is limited by your condition, you also may have to adapt your home and lifestyle even further. Dr. Boland can assist you as you work to create a safe, accessible environment. Because Be Mobile Neurology is a mobile practice, she will be able to assess your home in real time and make recommendations to help increase your comfort. “I believe that a comfortable setting can help improve management of specific neurologic needs and concerns,” said Dr. Boland.
There’s nothing funny about a diagnosis of a chronic condition, but that doesn’t mean that there’s no room in your life for laughter. It’s commonly said that “Laugher is the best medicine” and science shows that it has real benefits for the body, including boosting immunity, lowering stress hormones, decreasing pain, and relaxing muscles. When you have a chronic illness, laughter can be a great coping mechanism.
Make a conscious choice to laugh every day. At first you may need to look for the humor in any given situation but soon the laughter will come more naturally. Spend time with people who brighten your day and do things you love. Watch funny TV shows, read humorous books, and have a good laugh.
We hope that these strategies are helpful to you as you learn to live with chronic disease. With the right mindset and the right care team, we believe that you can optimize your health to live fully and happily. If you’re interested in more information about Be Mobile Neurology and how we can help you, please call (813) 981-4403 or visit us online.