I spend 75% of my energy trying to make everyone around me believe I am okay, and 25% trying to convince some people how sick I am. This is the paradox of being sick. More specifically the paradox of chronic illness where there is no getting well, just marginally better than before - and that is if there is a treatment available.
People with chronic illnesses spend so much energy just trying to continue with life. At one time things felt manageable between work, home, and relationships. Things may have even been on an upward swing and going well. Slowly and then suddenly the things that felt so easy and ordinary feel so difficult and overwhelming. Just showering or leaving the house becomes a herculean task. While you feel like you are breaking down, you don’t want the world to judge you for what you do not even understand yet.
The time between the first symptoms and the actual diagnosis are very difficult. Each day you can feel worse but letting other people down or worrying them is something that just cannot be handled. Instead of resting more, sometimes people with chronic illnesses will push themselves beyond their limit to not disappoint their loved ones. Yes, I will be there. Yes, I will help you. No, I’m okay. Don’t worry about me. It’s easy to say that this is an unhealthy way to cope, but unless you’ve been there yourself it is hard to let go of so much of who you were. For me, being the one to always help others, it was hard to say no when people ask for help and I am always the last person to ask for help, because the last thing I want to be to anyone is a burden.
While I pretend to be okay too often, I also have to sell all my symptoms during each doctor’s appointment. It is unbelievable how many years I have had the same symptoms with different doctors and still ignored. Many people who have chronic or invisible illnesses are heavily questioned not to gain clarity, but to try to find a hole in our symptoms. Even if you go to the doctor on a good day and say how you feel, your illness may be overlooked. “Oh, it’s just anxiety.” “It’s just stress.” “Sounds like you have a lot going on in your life.” - No, I am sick, please see me.
For a lot of patients it takes many years to be diagnosed. Without due diligence and extensive symptom tracking, many friends of mine who have chronic illnesses may not have been diagnosed. A close friend has MS, and without her insistence and convincing her doctors she may not have been given a diagnosis sooner which then delayed her important treatments. Another close friend struggled for two years to be diagnosed and even her own family struggled to see the illness. For myself, after looking back through my life, I always had endometriosis and instead of getting real treatment or a diagnosis I was made to feel crazy. So much time has been spent trying to convince someone to see the illness, to see me, to help me.
While I don’t want to be treated like I am sick, I want others to believe me and my symptoms. If I am having a bad day, please don’t make me prove it or call it a convenient excuse; saying good-bye to my former lifestyle is hard enough without all the criticism. This process isn’t easy for anyone and being sick is never a choice.
Article Written By Roni DiGenno