By Joanna Tierno
1. Be knowledgeable enough
Knowledge is power and can help you chart the best course of action, such as finding the best doctors and treatments for your conditions. I have a handful of chronic, incurable diseases and conditions at this time. I have done my research, know the general prognoses and have reached out to find other patients with similar conditions. Knowing is a great thing, but hearing how stories like your own sometimes end, knowing what can go wrong and knowing the suffering your conditions can cause makes the future a scary place. Try not to get caught up in the “what-ifs” and outcomes of other fellow patients. Know YOUR disease and what’s best for YOU.
2. Live for today
No one knows our exact outcome until it happens, so it is really best not to dwell on the future. Live for today! If today isn’t great, then hope for tomorrow. The longer you live with any condition, the more likely that new information or treatments will develop. Always hope and learn to manage fear.
3. Don’t compare yourself to others
Comparing your health to that of another may only make you feel bad and wonder why you have been shortchanged. Looking back on what you used to be able to do (be in the sun, eat oranges, go to the movies, long walks, etc.) may leave you feeling a sense of loss and how different you are from your healthier, former self. It’s just not good to compare.
4. Don’t be afraid to ask for help
I’ve dealt with my primary immunodeficiency disorder largely on my own for many years. As the number of my conditions has increased, my lifestyle has had to change in countless ways, and sometimes I need help. Because I have conditions that are not fully understood by most, help and support are rarely offered. I have to ask, explain and sometimes even demand. It’s not easy being sick. No one is prepared for it. That makes the burden you carry all the heavier. It’s OK to not be able to carry the heaviest loads all by yourself. Just because you’re a rare disease warrior doesn’t mean you don’t deserve quality of life. Know your limits, and reach out for help when you need it.
5. Do what makes you feel good
It can be hard to stay positive when you spend most of your time managing symptoms or running to doctor appointments. On your good days or moments, try learning something new, helping someone or doing anything that makes you smile. It may be small, like listening to an audio book or giving a newly diagnosed patient a list of resources. I have had the opportunity to make a difference by sharing my story and advocating for causes I believe in. We all have a purpose; we all have something to offer and ways in which we can be growing. Think about the things you can do that matter to you, and try to make them happen. The world is filled with wonder. What could you be learning and contributing for a meaningful life? Having purpose gives us a reason to keep fighting.