Thursday, August 6, 2015

Having an Invisible Illness

Are you guys ready for pictures of cats? Because talking about Lyme disease means pictures of my cats cuddling me on my sick days. Today I found this article on buzzfeed about what it's like to live with an invisible illness. I clicked on it and was even more excited to read it, after finding out it's from the perspective of a woman with Lyme disease.

Her struggle to get diagnosed was much much worse than mine, but she brought up some interesting points on what it's like to live with an illness that people can't see and the struggle it is to have the medical community recognize Lyme as the persistent debilitating disease it is. I highly recommend reading it to understand more about Lyme disease.
When you have an invisible illness you have to choose to share your illness with people. You choose to share your journey with people; and sometimes I'm grateful for that. I don't want everyone I know treating me differently because they know I'm sick. I don't want everyone to give me that look when I say I can come to something depending on how I'm feeling that day. Mostly, I don't want them to see me as my disease, but just as me.

A whole new world has been opened to me since my diagnosis. A world of people that are struggling with illness just like I am. We follow each other on Instagram and give each other tips and leave encouraging comments on each other's pictures when someone is having a bad day.
Because having a bad day doesn't mean the same thing it used to mean. It could mean something as simple as riding the metro home made me feel so nauseous and sick that all I can do is lay on my bed in a dark room until Hal gets home from work. Or it can mean I feel like I'm in the middle of the worst flu I've ever had from a herxheimer reaction, and there's little I can do about it except try to sweat it out in steaming hot Epsom salt baths, and wait it out by watching inordinate amounts of Pretty Little Liars.

Having an invisible illness I don't think means having people not believe your sick. I think people believe me. But it means some people have a hard time understanding what you're actually going through, because they can't see how you feel. It means always having people ask you how you're feeling and what they can do; when the last thing you want to do is talk about feeling sick or direct someone in what they can do for you. But at the same time, I feel so so lucky to be surrounded by people that love me enough and care to ask.
I've been on antibiotics and in treatment for 8 months now. When I think about it sometimes, that feels like eternity. I've had a setback with my symptoms and a whole change in my medicine regime which I'm having a hard time adjusting to. It just felt like I was getting better. I went from feeling worse from starting treatment, to feeling so much better and realizing how crappy I did feel before treatment; to once again feeling crappy. It often leaves me feeling disheartened, wondering if I'll ever feel better.

But I will feel better eventually. I know I will. Because there's no other option.


Autumn said...

I have an inkling of how you feel because I felt this way about my chronic neck and back pain the last few years. I knew it wouldn't get worse, but I wondered if it would ever actually get better. Is there an internet support group or facebook for people with lyme disease? Maybe they would have good info for things that helped them??

Susannah said...

Oh, sweet girl! I'm so sorry you're feeling discouraged! I'm praying for you!

Torrie said...

How frustrating! There's nothing like having all the hope of a new treatment (or having a treatment finally work) to just be revisited with your symptoms again. Something that helped me last week when I was having a mini pity party for myself was reading this article in the Ensign about patience, where the author cites a talk by Neal A. Maxwell about how sometimes, we're meant to go through a trial for longer not because we ourselves still need something from it, but because we need to inspire others with our strength.

I'm so glad you've been sharing your story with us because I know that it gives me strength knowing that I'm not alone in the world of invisible, random illnesses that just knock you straight into survival mode some days.

Hope you find a treatment that works soon :)

Ashley said...

I am the biggest wimp when I am feeling sick, so to know you've been suffering with this for so long, and with such poise, is really admirable. I truly believe things will get better for you! Especially because you're one strong lady!

Heather Sander said...

I'm not going to tell you to not be discouraged. It's discouraging. It's hard to deal with something that has that much of an impact on your body and every day life. ... Trust me, I could write a book on it. It will eventually get better, more manageable, easier but for now all you can do is deal with it as it comes. I'm sorry you're going through this. I love you bunches and if you ever wanna talk, you have my number.

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