Suffering from chronic or serious illnesses raises some questions about what our priorities in life should be.
Do we do our best to maximize our happiness by spending our time with the people we love? Or do we push forward to try and fulfill our ambitions and satisfy ourselves that way?
While this is a challenge for everyone, the presence of a disease complicates things further.
Rare illnesses complicate things further because in addition to the associated health issues, patients often also feel alone and lonely.
The rarity of their condition makes it harder for them to have conversations about their illness which is a vital part of dealing with it. This can lead to negative impacts on their mental health and can take a toll on their motivation and drive.
Finding a good balance in life between personal happiness and ambition is crucial in mitigating such adverse effects.
Tip 1: Find Your Unique Balance
We are all different and we value things differently. Instead of looking to society or outsiders to validate or provide us with the right mixture, the best option is to look inward.
Look at your past to see what you have valued and what mixture gave you a sense of balance in your life. Think about what the illness means for your quality of life and ask yourselves if the changes have caused you to re-evaluate your priorities.
Tip 2: Have a Frank Conversation with Your Doctor
Having formed an idea of your priorities and having created a picture of what you see as a balanced life, it is important to speak to your personal doctor going forward. As they understand your priorities and context, they might be able to modify your medication to suit your new goals and lifestyle better.
For example, consider a patient with Encephalomalacia (a rare disease that leads to localized softening of brain substance).
The medication that the doctor prescribes to a patient who wishes to maximize time spent with family is likely to be different from the medication profile prescribed to a patient who wants to dive into a new career that involves a lot of physical activity. Even though there are no curative treatments for the condition, the doctor might be able to mitigate symptoms that are most likely to be a hindrance to the chosen goal.
Having your doctor in your corner can thus make a radical difference towards finding a balanced lifestyle.
Tip 3: Enlist Support from Family and Friends
The people around us who are sympathetic and want to help cannot do so unless we inform them of any change in our priorities.
By having a frank and open conversation about the challenges your illness poses and your new goals, they may be able to find opportunities and avenues for you. If nothing else, a kind word and an encouraging tone will make the challenges seem much easier to deal with.
Of course, remember that while listening to advice might be helpful, you and you alone must choose your lifestyle. Blindly following other people’s well-intentioned advice will lead to being burnt out if you end up unhappy with an unbalanced life.
Having rare illnesses is undoubtedly an obstacle along the way to accomplishing our goals and being happy, but it can be overcome with judicious planning.
All the best on your journey to finding a balanced life!