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How to Maintain Your Independence with Chronic Illness

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Living with a chronic complex illness, such as Long COVID and ME/CFS, can often leave you feeling as if you have or are losing your independence. Finding independence when living with a chronic condition is a deeply personal journey that requires self-discovery, resilience, and adaptability.

It involves embracing one’s strengths, accepting limitations, and cultivating a mindset of empowerment. It may entail developing effective self-management strategies, seeking the right support networks, and actively pursuing knowledge and resources. By taking ownership of your health, setting realistic goals, and advocating for your needs, you can reclaim your independence, redefine your identity beyond your condition, and live a life that is meaningful and fulfilling, despite the challenges you face.

The Importance of Regaining Normalcy and Gaining Independence with a Chronic Illness

Maintaining independence when living with a chronic illness is of paramount importance for several reasons. Firstly, it promotes a sense of control and autonomy over your own life, allowing you to make decisions and choices that align with your personal values and goals. Independence also fosters self-esteem and a positive sense of self-identity, as you can continue to engage in activities you enjoy and find meaningful, despite the challenges posed by your condition.

Moreover, independence enables you to actively participate in your own healthcare management, make informed decisions about treatment options, and advocate for your needs. By maintaining independence, you can live a more fulfilling and empowered life, despite the limitations imposed by your chronic illness.

Tips for Gaining Independence with a Chronic Illness

Gaining independence with a chronic illness can be challenging, but with the right strategies and support, it is possible to lead a fulfilling and independent life. Here are some tips to help you in your journey.

Educate Yourself

Learn as much as you can about your chronic illness. Understand its symptoms, treatment options, and how it may affect your daily life. This knowledge will empower you to make informed decisions and manage your condition effectively.

Build a Support Network

Surround yourself with a strong support system. This may include family, friends, support groups, or online communities of individuals facing similar challenges. Share your experiences, seek advice, and offer support to others. Having people who understand and empathize with your situation can make a big difference.

Complex illness, chronic illness, Long COVID, ME/CFSBecome a Member of Your Medical Team and Advocate for Your Treatment

Unfortunately, not all primary doctors are educated on Long COVID, ME/CFS, and other complex chronic illnesses. In many cases, for example, when laboratory results come back normal, as they often do, a physician lacking knowledge of these conditions may say there is nothing wrong or that the symptoms you are experiencing are due to anxiety or all in your head. This medical gaslighting is common and often the reason for a delay in diagnosis and treatment for many of those with chronic conditions. If you experience this, it may be time to look for a new primary physician who is willing to listen and work with you to find the right diagnosis and treatment options.

When you have a knowledgeable physician or one willing to learn, it is essential to become an advocate for your health. Establish open and honest communication with your healthcare providers. Clearly express your needs, concerns, and goals. Collaborate with them to develop a comprehensive treatment plan that aligns with your desire for independence.

Be your own advocate. Learn about your rights, entitlements, and available resources. Communicate your needs assertively and seek necessary accommodations at work, school, or other relevant settings. If attending medical appointments pushes you past your energy envelope, consider talking with your provider about telehealth options. Don’t be afraid to ask for help when needed, but also understand that you might get resistance from others, especially since you may not “look” sick or disabled. 

Create an ER Binder

Going to the emergency room can be a stressful process for everyone, let alone someone with a complex chronic illness. In many cases, ER physicians and support staff are not at all familiar with these chronic conditions, and receiving appropriate treatment can be difficult. Creating an ER binder provides information to any provider you may see in the emergency room. Within your binder, it is important to include a list of all your current providers, meds, and specific treatment options that may be recommended in specific scenarios, such as cervical spine protocols for anesthesia and other anesthesia for those with conditions such as MCAS or EDS. Be sure to have your ER binder in a place that is easily accessible to you or to emergency personnel.

Work to Manage Your Symptoms

Develop self-management strategies along with your provider to minimize the impact of your symptoms on your daily life. This may involve medication management, adopting healthy lifestyle habits (e.g., proper nutrition, regular exercise (talk with your provider before beginning any exercise program, especially if you have post-exertional malaise (PEM), adequate rest), and incorporating stress management techniques such as meditation or relaxation exercises.

Set Realistic Goals

Chronic illness is often a lot about trade-offs, especially for those with more severe conditions. For example, “Do I shower today and rest for an hour or more afterward or will it be better to do a simple sponge bath for today so I have enough energy for my doctor’s appointment?” Break down your goals into smaller, achievable steps that will work around these potential tradeoffs. Focus on what you can do rather than what you can’t. Celebrate your accomplishments along the way, no matter how small they may seem. By setting realistic goals, you can gradually gain confidence and build independence.

Incorporate Different Tools and Aids as Needed

Modify your living space and daily routines to accommodate your needs. Consider assistive devices or technologies that can make tasks more manageable. Make your home accessible, conveniently organize your belongings, and simplify your daily routines to conserve energy.

Examples of different aids and assistive programs can include:

  •       Mobility aids, such as canes, walking sticks, wheelchairs, and scooters.
  •       Talk with your provider about a disability placard for your vehicle.
  •       Bedside tables or carts on wheels that can move with you and provide easy access to necessary items.
  •       Lap trays that allow you to eat or perform tasks in bed.
  •       Consider grocery delivery services in order to reduce energy expenditure.
  •       If you take a lot of medications, incorporate a pill organizer that you or a loved one can fill on a weekly basis.
  •       Add a bar stool in your kitchen in order to provide support when cooking.
  •       Showers can often be difficult and expend a lot of energy. Consider a shower chair or bench.

Make Self-Care a Priority

Take care of yourself physically, mentally, and emotionally. Practice self-compassion and self-care activities that rejuvenate and restore your energy. This may involve engaging in hobbies, spending time with loved ones, or seeking professional counseling or therapy to address any emotional challenges you may face. While you may not be able to do hobbies as you once could, it may be possible to incorporate modifications or find similar hobbies that work within your energy envelope. 

Be Patient and Flexible

Living with a chronic illness can be unpredictable, and there will be good and bad days. Be patient with yourself and allow for flexibility in your plans. Adapt and adjust as needed while keeping your long-term goals in mind.

Remember, regaining independence is a personal journey, and it may look different for each individual. Stay resilient, seek support when needed, and celebrate your achievements along the way.

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