The moment I am reminded. . . Yes, I have a disease

A couple of days ago, I woke up feeling like I had been hit by a bus. My entire body was not only fatigued, but I felt like every inch was bruised. This feeling was intensified in my arms and legs, you know, those body parts that are helpful for movement. My head was in a fog, I had what I considered to be “Canada Head.” (This phrase was coined by my mom and myself, because we frequently travel to Canada, but we frequently do 24 hour trips and that results in fun adventures and whims, but very very tired states in the end. So, when your head is so exhausted that it is in a cloud of non-functionality, THAT is Canada Head). And I could only sleep, sleep for the entire day. But, after about 12 hours of sleep, I didn’t feel any better and I simultaneously wanted to sleep more and not sleep again for awhile.

It has been a long time since I have felt this way. Why did I feel this way?

I have two autoimmune diseases.

I haven’t mentioned my health on this blog yet, because I wan’t sure that there was a need to. What did my health have to do with the focus of my blog? If I was going to mention my health, should I instead have a blog devoted entirely to this? (I had briefly considered this at one time.) Why did my health matter to my readers?

But, I determined something.

Sharing about my health is cathartic. In the past couple of days, I have been blessed to come across some amazing ladies who are bloggers and who also live with autoimmune diseases. In them, I find a sense of community that I cannot find elsewhere. My family and friends are amazing, but if you have an autoimmune disease, you know that it can be very hard for someone without one to fully understand your experience. Sharing about my health is not only cathartic, but it opens up to another beautiful community.

So, what is my health all about?

I have Hashimoto’s Disease, which is a disease focusing on the thyroid. I have also been diagnosed with Undifferentiated Connective Disorder, which in my mind, is both a diagnosis and a lack of diagnosis. Having Undifferentiated Connective Disorder means that my body has indicators for another autoimmune disease, but they are not pointing strongly enough in one direction or another. Most seem to point toward Fibromyalgia, while a few point to Lupus. We will see how things develop. In the meantime, I am on a few medications to help protect my organs, help with anxiety, and hopefully keep my body functioning as best it can. All of these diseases and potential diseases boil down to one thing: my body is attacking itself for who knows what reason.

Having these diseases, I am in denial a lot. Many autoimmune diseases are also invisible diseases. This means that I may be experiencing a host of symptoms, but to an outsider, I look perfectly normal. When I have many good days in a row, I convince myself that my diseases don’t exist. When I have a flare up, I try to convince myself it is because I didn’t try hard enough to be productive and responsible. (and that mindset creates a very mixed sense of feelings when I am genuinely trying to assess my life progress). When I am busy, I tell myself that it is too much work to take my meds and it won’t matter if I skip (although if I skip enough days my body reminds me that the meds are really needed). I convince myself that I can do things at the pace I did 10-15 years ago, when my diseases were less severe, and then my body crashes and I suffer for it. When I am not living up to my expectations, because my body won’t let me, I feel guilty and embarrassed for putting on make-up or dressing nicely because if I don’t look sick enough, I am convinced that everyone is judging me and thinking I am making it up. I am exhausted trying to put effort into lifestyle changes that make my body thrive (eating habits, sleep schedules, etc. ) because it is a lot of prep work to make good choices. I am frustrated because I know I should go to bed early, but I want to be like other people my age, or like my husband, who can go to bed at any hour and still wake up on time and get it done. In short, I am in a constant identity crisis with my body and health. And I am the only one who can figure it out. Because the thing is, diseases affect everyone differently, and no one can tell me what works best for me, I have to experiment, listen to my body, and adjust where needed.

So, this may seem like a stream of consciousness, but I think that autoimmune diseases need to be accurately represented. And the truth is, those of us who have an autoimmune disease, experience it at different levels and in different ways. But, I think for all of us, we are constantly at battle with our minds, our bodies, our dreams, our expectations, the world. But we fight, and maybe one day we will have it figured out.

If you have an autoimmune disease, I invite you to share your story! What is your experience like and what would you like others to know?

If you don’t have an autoimmune disease, I still would love to hear from you! Let’s keep the conversation going. If you have questions, ASK!

Peace,

Ashley Marie

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14 thoughts on “The moment I am reminded. . . Yes, I have a disease

    1. Thank you so much for your kind words! I am certainly trying to give my body the TLC it needs to recover a bit (at least the bit that I can control). Hopefully, the more conversations that we keep having can help people understand. I can relate, when you haven’t experienced something, it can be very challenging to wrap your head around what is going on, especially when logic would dictate otherwise.

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    1. Aww, thank you so much! I tend to go back and forth with wanting to share about my health and with wanting to keep it all to myself, but I think that it was a positive for me to share. It makes it a little more real for me.

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  1. Thank you so much for your sweet comment! I appreciate the community so much.
    On a side note, your “ps, definitely name it” had me so confused until I finally remembered how that was connected, lol. I swear, my memory is so wonky at times.

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  2. This was so honest and I am so glad that you opened up about it on your blog. I feel like every human experience is worth sharing with others because you just never know how it may affect someone. Whether it’s giving someone something to relate to, or teaching someone like myself a new thing. I had not been aware of this before and I am happy to have read it. I feel more informed now and I have a great inside view from someone directly who can give me reliable info about it. It’s much nicer than googling something and getting a robot answer. Keep sharing, darling!x

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    1. Thank you so much! I am glad that I was able to share with you a new experience. I will add that every person with an autoimmune disease has their very own unique experience. If you read the stories of others, you may hear contrasting ideas. It is both fascinating and yet so complicated at the same time.

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