Truth about Autoimmune Disease

 

I’ve found one of the more persistent aspects of illness to be shame. It takes explaining for a person to understand why I, looking perfectly normal (fully clothed, at least) cannot reach to take something being handed to me, or how I got that scar, or why I cannot meet up later that day. I’ve become a knee-jerk excuser, but here’s why you should be honest about your illness.

1) The truth is ultimately easier, even when it’s complicated. If you’re constantly offering faux reasons why you cannot hang, friends, being good, will accommodate however they can, and ask again with seemingly mitigating factors in place. Until you say: “I cannot reach the steering wheel today,” or, “I have anxiety over people seeing me weak,” or, “I cannot find the strength to shower,” you’ll be chasing your truth. Your friends will understand; they will always try! And with the truth they can offer the real friendship you both need–even if all that means is good thoughts your way.

2) You will sleep better at night. My partner and I talk about guilt from time to time. He experiences guilt in a pragmatic way; how God intended if you will. He feels guilty for things he’s done with intent. I feel guilt when my intentions are good, bad, or non-existent. I’ve laid in bed trying to remember what it was that I had said in avoidance of my (health) truth, debating wether or not it was the right thing to say, and trying to bank it in my memory for the next time I see said person. It might take longer to explain, your face might turn red, but the truth takes no memorizing, and little post-contemplation as you become more comfortable with it yourself.

3) You will find support in unexpected places. Accept it: you probably need help during this time. If you are lucky enough to have a loving companion, chances are, you need more help than he or she can provide. Chances are, that person needs help, too. When you tell the truth, people will want to support you. When I was finally truthful with my school, that I could not come back to work and why, they signed up to prepare and deliver dinners specific to my very limited diet. I didn’t have to worry about a meal for three weeks. I well with gratitude thinking of it now. (I felt grateful to the point of guilt, knowing we all have complicated, busy lives, but that is different problem I need to work through!) You’ll find others with similar, if not the same issues. My mother recanted a conversation surrounding a friend’s experience with postpartum Graves’ disease, and her admiration for my perseverance and positivity throughout my pregnancy with Graves’. For whatever silly reason, it felt so good to have her praise and support. I’ve never met another person with Parsonage-Turner Syndrome, but have met others grappling with neuropathy. Sometimes it helps just to talk about pain. Together you can find the words to explain it, brainstorm what the professionals haven’t figured out yet, and hug someone with a fuller appreciation of your strength.

Maybe one of the harder parts of this honestly is the desire to not be a complainer. I want people to think I’m tough, and that I don’t for one second forget the many things for which I am fortunate. Finding a way to be factual, and forging ahead is where I’m aiming.

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13 thoughts on “Truth about Autoimmune Disease

  1. How to explain without feeling like a complainer…I cannot wait to figure this one out!! An excellent read. I’m waiting with baited breath for the next chapter!

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  2. Have you seen the book , Medical Medium? He adderesses autoimmunes as being connected to the Epstein Barr virus.

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  3. Thanks for sharing this blog. There are a lot of people that suffer everyday and it helps to have a positive and honest message so they don’t feel so alone

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  4. I am a friend/coworker of your Mom’s. The talks we share and the stories I hear about your strength and endurance, I cannot help but admire you. Your commitment and perseverance to “beat the odds” are so very encouraging and hopeful. You are a very humble and beautiful young lady and I pray for all positive things in your life, especially with your beautiful Sibbie! Much love to you and your family.

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  5. You are constantly inspiring me too work harder and do more Cass. I’m off to tell the internet about your Blog!

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  6. I totally understand and agree with your point of guilt being a huge part of illness. I found that to be the case some sixteen years ago with my own battle but I further think we women tend to be worse then men on this. Just remember honey strength is measured in many forms and some days strength comes from just getting out of bed. Love you

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