By Lakshmi, Relapsing polychondritis, United States, March 4, 2019
"Not Again," was my first thought when my doctor told me that my immune system is attacking me and causing the inflammation that is making both my ears red, swollen, tender (not to mention painful). He suspects that I might have an autoimmune condition called Relapsing Polychondritis that is causing my cartilage to inflame and so he recommended that I see an ENT and a Rheumatologist to figure out if that's indeed the case. It might be or it might not be........and voila! the can of worms opens.
This certainly is not my first rodeo with pain/navigating in the maze of unknowns but after I came home, I was filled with a sense of overwhelming dread........
- Dread of going through the maze of specialists and never ending tests
- Dread of explaining myself over and over again
- Dread of visible/invisible symptoms
- Dread of hearing "it's psychosomatic," "its in your head," even though I know it isn't
- Dread of being invalidated
- Dread of listening to all the home remedies/treatments that will not apply to me at all
- Dread of the litany of well-meaning advice to "not think about it," "keep myself busy"
- Dread of the unclear picture and the feeling of doubt that something is wrong with me
- Dread of falling into an hopeless, depressive state cos of the never ending illness cycle
- Dread of dealing with fatigue and tiredness
- Dread of feeling lonely
- Dread of the uncertainty of my health - how am i going to feel tomorrow, or when will I get better or will i ever get better.........not being able to plan ever
- Dread of losing everything I worked hard for
But most importantly I DREAD the IMPACT ON MY FAMILY, MY LOVED ONES, MY LIFE, MY RESPONSIBILITIES
When I was leaving his office I laughed and told him that I never get a fever or cold, that my immune system is so messed up that it constantly feels the need to attack me and that the only good thing is it is at least visible now (talk about small blessings!!!). And he smiled back and said "Yes, that is true and hopefully we can find out what it is."
I know I will have more downs than up and I am dreading this experience. But I know and trust what I am feeling and going through. Maybe it's because I am already dealing with chronic pain/fibromyalgia every single day. Maybe its because for once it is visible and I don't have to deal with self-doubt questions. Maybe it's because I am taking it one day at a time. Maybe its because I finally have a Doctor who I trust, who listens to me and works with me. Maybe its because I have people in my life - my family, my friends who love and care about me.........Maybe its because I know that I have to be patient, that I can trust myself and that my health is just a part of me.......of all the parts that make me and not the whole. Finally, maybe its because I know I do have the mental strength to get back when I am physically and emotionally down.
“Pain diminishes us, and it is so important to remember, in the midst of pain and everything that pain takes from you, that still ... you are enough. You are enough just as you are. You are worthy of love and kindness. You are enough. And you have enough.”
― Steve Leder, More Beautiful Than Before: How Suffering Transforms Us
This post was published first on January 19, 2019 at https://lgvblogs.wordpress.com/