Thursday, May 30, 2013

Fix It

I work as a product engineer in the semi-conductor field. My goal is to identify a problem as quickly as possible, figure out how it happened, and fix it. I get bonus points if I fix it in such a fashion so that it will never happen again. My entire job revolves around fixing problems.

Many of my friends have a similar drive. When they see a problem, they want to fix it. I have actually met very few people that don't want to fix a problem. Step One: Identify Problem. Step Two: Solve problem. Step Three: Congratulate yourself on a job well done. Step Four: Move on.

But what happens when the problem cannot be fixed? 
How do you react? 
How should you respond? 

There is no fix for my disease. There are only patches, only Band-Aids. The daily medicine I take is not to cure my disease, but rather to try to improve my quality of life. This is something chronic. I have been wrestling with it for years. Also, this will not go away. I will continue to wrestle with this chronic disease for the rest of my life. I understand that people struggle with knowing how to react to a chronic illness. They want to fix it, and can't. They want to remove my suffering, and can't. They want to eliminate my pain, and can't.

I understand that struggle. As someone who battles a chronic disease, please allow me to share some words of advice. I know that you would do anything to fix it for me. You would do anything to remove my disease, to end my suffering, to stop the occasional health nightmare. You can't. You cannot fix my disease, you cannot prevent my pain. You can only watch. That is hard for you. But it is ok. I do not expect you to be able to fix this for me. Please do not try to fix it. You will drive yourself mad. That will benefit neither me nor you.

I realize that you might not know what to say. That is ok. Please do not try to compare my energy crashes to someone who did not get enough sleep the night before. When I open up and mention some of my struggles, do not tell me to consider those "worse off" than me to help me feel better. Do not tell me, "At least it's not cancer." Sayings like that do not help me, nor do they help you. Also, do not be afraid to mention your aches and pains. "But this is nothing compared to what you suffer through everyday." Y'all, pain is pain. Am I constantly nauseated with a low level headache? Yes. Does my headache make your back ache any less painful for you? No. Never be afraid to admit that you do not know what to say or how to respond.

I can see that you do not always know how to react. You ask me about my plans for the weekend and then are surprised when I tell you that I don't know them. As of late, I cannot plan. One hour I feel fine, the next hour I am struggling to move and can barely speak. However just because I cannot plan, please do not stop inviting me to things. But do not get disappointed when I have to cancel or turn them down. If my energy is good, I can go. If my energy is bad, I will have to withdraw. Unfortunately, this isn't something I can plan out. Please understand that. Each day is a new challenge, and frankly, each hour. Also, it is my responsibility with how I handle the disappointment of having to say no. Not yours. Please do not cut me out of of your life. But do realize that my life has become unpredictable.

You cannot fix my chronic disease. You might not know what to say about my struggles with my chronic disease. You probably don't know how to react when my disease flares up. So what can you do?

Accept it.


Accept me for who I am. I don't expect you to always have the perfect words. Don't expect that of yourself. I understand that you might grow frustrated with my flakiness, but please try to understand that this is outside of my control. And believe me, I know you would do anything to take this burden from my life. Because a life with a chronic disease does look different than a life without a chronic disease.


I am still Clearly Alive.

7 comments:

  1. Hi Amber,

    I have Addison's Disease, Graves, Sjogren's, Osteoarthritis, Chronic Migraines etc, etc, ...
    I just found your blog the other day. Your post says it all! Perfect. Take Care **

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    1. Welcome Bobbie

      Gotta love how the autoimmune diseases can start to have a snowball effect! I am glad you found my blog. Please keep in touch :)

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  2. Hi Amber, any luck with a new Endocrinologist? Did you ever find out what caused your last crisis?

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    1. A lot of luck with the new endocrinologist! It was a different woman than you recommended, but still really good. She immediately wanted me to see a lot of different specialists to try to piece together the bigger picture that is my health. I've had countless doctors' appointments and who knows how many tests run the past couple of weeks...

      ... And no firm answers yet to what caused the crisis on 4/19/13. But each time we rule another thing off the list of potential causes, we're one step closer to finding actual cause. That keeps us full of hope :)

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  3. This is well-said and beautiful. I'm going to share it in a few places, because it is so hard to tell exactly what we need. I'm only beginning to piece my puzzle together, but the road ahead will be long and difficult. Being able to let others know how to handle "me" will be wonderful. Thank you!

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    Replies
    1. Feel free to share this with anyone. And thank you :)

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