Chronic Illness

If you have a chronic illness, there's no denying that it affects your life.  But how much you allow it to determine the quality of your life depends, to some extent, on the way you choose to live day to day.  While I was searching for words of comfort and encouragement, I came across this Buddhist Sangha Noble Eightfold Path that says:

"Pain in life is inevitable but suffering is not. 

Pain is what the world does to you, suffering is what you do to yourself.

Pain is inevitable, suffering is optional."

My greatest wish is that friends and loved ones would understand invisible illness and what I am going through.  The stigma, isolation and depression  having a chronic illness takes a toll on me and my family.  I'm sick of being judged.   Just because I dressed well and make up on, I should be feeling fine.  Just because I am smiling does not mean that pain is not bothering me .  I choose to not to dwell on the negatives but to move on.  Why I desire to look better than normal on good days because I can't feel better.    I prefer to put on a smile to hide my pain because if I smile the world will smile with me. 

One discerning truth having chronic illness is knowing who my true friends are.  I have apparently, at some point find that the friends I had may not be the people they actually were; friends are humans too and humans ARE inherently selfish.  Friends get tired of your illness, tired of your whining and most of the time, they leave. The worst phrases I would ever want to hear again is "it's all in your head"!  The biggest lesson I have learned through having chronic illnesses is that at the end of the day, I am and need to be my own best friend because this person will NEVER leave me.  

My other wish is, if there comes the day I can feel normal again, I would GO, to a movie (because I don't have to worry about pain), shopping, karaoke singing, tour the globe and do the things I've been missing.

So, it is doable.  Having a chronic illness is NOT a death sentence.  Get the right doctor, one who listens and takes you seriously. If you are not happy with your physician, do NOT hesitate to find another one (I'm still in this process).  If that second opinion fails, go for a third.  Equally important, be your own advocate.  Speak up for yourself and never be afraid.  Ask, if you are concerned about a medication, a symptom or a treatment plan.  Bring along a list of questions/concerns when going to an appointment.  It serves as a reminder in case you forget the most important questions.  Be your own advocate. 

Adjustment is one key thing and the hardest for most of us.  Pushing ourselves means to pay back later.  Stop and ask yourself what a reasonable expectation of yourself/daily activities is, rather than comparing yourself to the person you were prior to getting sick or being in pain.

That said, adjusting to a different lifestyle (permanent or temporary) requires a certain type of mourning for a person and life that you do not recognize or have anymore, one that you may never have back. Acceptance was personally the hardest part of my story so far. I am still in the process of accepting that my life has changed and that I cannot control day to day events, that I can’t plan things the way I used to, and so on. It is normal to mourn that part of you or part of your life that you miss, wish you still had, etc. It is normal to carry that sadness with you for some time, too, however adjusting to a different lifestyle doesn’t have to be entirely negative. Since having to slow things down, take some time off from work, etc, I find myself being more laid back and enjoying and appreciating the little things so much more.

Never give up searching for answers. It’s exhausting and can be an incredibly long road, but never stop. You owe it to yourself and deserve answers and validation, despite anyone around you telling you otherwise…

Find a hobby to keep you distracted or busy when you’re feeling down or need a stress relieving activity.  For me, I've discovered blogging where I can express myself, talk to myself, share with people who wishes to learn and possibly offer some help and advice.

REACH OUT and connect with people going through similar experiences.  Find a support group, a community of beautiful people going through similar experiences and have the ability to share their personal stories and advice with you, coping skills, and so on.

LAUGH for laughter is the best medicine.  Find the time to laugh at yourself, your illness and shed some light on your dark times.

Keeping a positive attitude can be challenging when you feel like the foundation beneath your feet is crumbling, but focusing on positive aspects of your life might just give you the strength to get through that next flare.