Living with an Invisible Illness & Mental Health Ish: Because I’m Not The Girl I Used to Be and Here Are Four Reasons Why

I’m sure at this point in your life, you’ve been sick at least once. When that happens, normally you have two choices.

You either go to the doctor for some type of antibiotic or you sleep it off until you feel better.

But what if you never got better? What if that cold or flu never went away? What if those temporary aches and pains and feelings of fatigue were permanent?

What if it got worse?

Like when the winter blues turn into a full-blown state of depression and you can’t find a way to see light at the end of the proverbial tunnel? What then? Seriously. Imagine the anxiety of knowing what you have was constant. Imagine what it would be like if that doctor of yours said there was no cure, and that it would, in fact, be a part of your life forever? Now, envision trying to explain all of this to your friends, family, and co-workers. How do you describe this shit in a way they’d understand?

Because you look perfectly fine —on the outside that is. How would you cope with having a chronic, invisible illness? Would you be deemed lazy or even crazy? Would you be treated differently? Would you be excluded from activities? Or, on the contrary, be so tired that you continuously say no to those friendly invitations? Maybe eventually, they’d stop coming altogether. At that point, would it start hindering your relationships, both personal and professional? The short answer, yes. Absofuckinglutely. Partly because when you break a bone, your physical disability is apparent to the world.

People see the cast on your arm and know without a doubt that you’re sick.

Maybe they’d offer you sympathy and support. Perhaps a kind stranger would hold open a door as you pass through on crutches. The same goes for illnesses that have obvious external symptoms. Like a cold or the flu (that I mentioned above). Because friends, family, and coworkers can literally see your red puffy eyes. The mounds of tissues at your bedside or your computer desk are usually dead giveaways. “Get some rest,” they’d say in a concerned voice. “You don’t look well.”

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But that’s the odd thing about not feeling well —you don’t always look the part. Because mental health ish and invisible illnesses are not immediately apparent to the naked eye. But that doesn’t mean you’re OK.

Because living with this shit can, in fact, leave you washed the fuck out —unable to perform simple, everyday tasks. But that’s just the tip of the iceberg. Because there are a myriad of serious, invisible illnesses and symptoms that go along with it.

But most of that will go unnoticed.

Not to mention the detrimental physical and mental effects it has on those living with it. Did you know in the U.S. alone that nearly 50 percent of the population has a chronic condition? I know that’s true for me. Because I’m not the girl I used to be. Somedays I think that’s a good thing but there are others I simply don’t. And when I don’t, I can’t deny that I feel like a burden to those around me —even to myself. Another part of me knows that’s not true. But it’s hard to differentiate.

My point here, living with an invisible illness like type one diabetes along with all my mental health ish is harder than I may make it seem. Because I may look happy but I’m simply not —at least not all the time. I want to be; so I’m trying. And that’s the thing. Trying looks different for everyone. Lately, I’ve been trying a little harder. Partly because I’m sadder than I’d like to admit. I want to say I don’t know why but the truth is I do. It’s complicated though. And here are four reasons why.

1. I’m tired.

When you’ve been diagnosed with a shit ton of somethings, it’s hard not to be. For one, I’m an insulin dependent (if you don’t know what that means click the link to your leftdiabetic. I’m also a recovering drug addict with depression, anxiety, OCD, PTSD, an eating disorder and that’s just off the top of my head. Because there’s probably more but that’s enough for now. I think you get the picture. Anyway, now do you see why? I mean, I’m tired, what seems like, all the time. I don’t want to be.

So I drink a shit ton of coffee. But even then, I’m exhausted. Because no amount of caffeine can fix what’s going on inside me. Honestly, there are days I can’t muscle enough energy to leave the house. There are weeks it hurts to simply get out of bed. And as the months go by, I don’t understand why my body hates me. Like if someone asked me what was wrong, I’d say what is right? Because sometimes, I feel incredibly jealous of others who are able to live their life as I want to live mine. I know I shouldn’t.

But it’s hard not too.

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Because having a chronic illness (make that illnesses) changes the way you see yourself. Because the person in my mind —perhaps based on who I used to be is completely different than who I am —even who I want to be. Because people my age seem to work all day, go out at night, manage multiple relationships, take care of household chores, exercise, juggle fulfilling hobbies, and get up the next morning to do it all over again. I know this because I used to be this. Not anymore.

Lately, it seems as if my days start backwards. I wake up tired and go to bed wide awake —that’s what it’s like when you also have insomnia. But that’s not all. Because on the other hand, chronic illness changes the way you relate to others. For me, I’m well aware that I disappoint people by canceling plans, by declining invitations all too often, and by not returning phone calls on the days I have nothing to say. And it hurts. It hurts that I can’t keep up. As a result, I tend to isolate myself in hopes of mitigating those feelings of failure.

2. Because chronic pain is lonely.

Because living with this shit can be incredibly isolating, sometimes in obvious ways but others, it’s far more insidious. I’d like to say subtle. When hours turn to days and days into weeks, it can feel as if I’m living behind a silent divide —isolated from life by an invisible window of pain. And when that type of anguish never pauses, it’s hard to feel connected —even to the ones we love. Because erratic and sometimes unpredictable symptoms shape the way we interact. Because this shit changes everything.

It’s like, I could be a crowded room and still feel alone. Because I’m no longer the girl with a permanent smile sealed on her face. Because what I feel is a different kind of lonely. And it’s hard to break the cycle. No matter how badly I want too. Lately, it’s getting harder to fake it. I mean, yes. Some days are easier than others. But for the most part, I find myself withdrawing in an effort to cope, which actually makes everything worse. At the same time, it feels like I can’t do anything else.

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And yes, there are medications I take that are supposed to help.

3. But the side effects suck.

Sometimes those side effects are worse than the symptoms themselves. But per my medical team, it’s important to stick to the regimen they gave me. Because when it comes down to it, I do, in fact, need them. Because chronic illness isn’t just about pain —it affects all of our bodily functions —mental shit included. That said, it feels like I’ve been forced to play doctor. Because this shit is never fully taught. You learn as you go. I was never good at science but now I have to be. Because in the case of type one diabetes, it quite literally is a matter of life and death.

4. So yeah. I have to accept my new normal whether I want too or not

That right there is why I just started therapy. Talk therapy. Because I truly want to feel like the happy girl I pretend to be all the time. Because each day presents unique challenges. I mean, there’s a reason behind every step I take and every thought I have. Because chronic illness is not straightforward and recovery is far from linear. It’s like just because I went on vacation last week and posted a pretty selfie on IG does not mean that I feel good today. And I think that’s the hardest part for people without it to understand.

Hell. It’s hard for me to understand. And that’s why I probably beat myself up more than I should. But like I said, I’m trying. It’s an adjustment and it takes time. Period. Because this type of normal is learning that life will never be normal again. No more are the days of carefree spontaneity that life “before” allowed. But that’s OK. Nothing stays the same forever. It’s not supposed too. That’s just how life works. And that’s why, on the days I feel decently alright, I try to do something outside myself. It doesn’t have to be anything crazy.

For me, I’ll clean my room, reorganize my closest or wash and dry my hair.

Because that shit, for whatever reasons helps. Because afterward, I feel productive —like a contributing member of society, which can make all the difference. I understand though —that it’s easier said than done. Because it’s hard to be productive when you’re constantly working through that evil mental fog, chronic pain, and never-ending fatigue and exhaustion. No matter how hard you try to pretend that shit isn’t really there, it is. Because it’s chronic.

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Because most days, I’m battling an endless parade of symptoms and treatments —most weeks consist of side effects and specialists —and each month, I’m permeated with lab tests, insurance claims, and doctor visits. No one sees that. No one sees how often days stretch endlessly into nights that are frequently marked with loneliness and fear. No one sees my lurking companions of anxiety and depression, silent but omnipresent. That’s because I don’t want anyone to see it. And also, because no one really gets it unless you too experience it.

Because you don’t until you do. You don’t until it’s you. And now it’s me. If this is you too and your new normal feels anything but that, you’re not alone. Things do get better. As awful as shit may seem, one step forward is better than no steps at all. And yes, there will still be days where surviving is all we can do. That’s OK too. But on the days life feels a little lighter, when you feel a little better —enjoy it however possible. Breathe it. Walk it. Do it. Why not drink a cup of coffee sitting outside instead of on the couch.

Take a trip to your favorite store. Retail therapy is a real thing, people.

At the same time, try to find friends who want you for you. People who accept the amount of time you can give. Because you’re not dead yet. And as cliche as this saying is, you really are stronger than you think. Braver too. Because it takes a badass human to put yourself out there again, to figure out who you are again, and to realize you deserve every good thing that comes your way. So try to find a way to grow within your condition. Because we are who we think we are. We are what we do.

And there are differences between the skills we haven’t developed yet and the self-imposed limitations we place upon ourselves through uncertainty and fear. Because yeah, pushing forward to meet your goals is an exercise that can be filled with discomfort. Avoidance —because you don’t want to feel vulnerable. Or maybe you’re afraid of rejection. At the same time though, by not trying, you’re denying yourself the potential to succeed. Because you can succeed. So take a step forward even if it’s a small one.

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Because your time as a caterpillar has expired. Your wings are ready. And never compare your beginning to someone else’s middle.

I mean, what’s normal for the spider is chaos to the fly.

xoxo,

macey bee

sources:

https://www.kaleidoscopefightinglupus.org/invisible-illness-but-you-look-so-good/

https://aleteia.org/2017/10/18/what-its-like-to-live-with-an-invisible-illness/

https://www.mytherapyapp.com/blog/living-with-invisible-illnesses

http://princessinthetower.org/the-isolating-loneliness-of-chronic-pain-invisible-illness/

https://www.psychologytoday.com/us/blog/chronically-me/201804/chronic-illness-fatigue

https://endometriosisnews.com/2017/12/11/endo-complexities-living-with-invisible-illness/

https://www.thedailybeast.com/what-its-like-to-live-with-an-invisible-illness

https://www.fastcompany.com/3062237/8-steps-to-break-through-self-limiting-beliefs-for-greater-performance

https://themighty.com/2016/04/finding-a-new-normal-with-chronic-illness/

https://themighty.com/2017/03/adjusting-to-a-new-normal-after-becoming-chronically-ill/

https://themighty.com/2016/12/accepting-new-normal-chronic-illness/

https://themighty.com/2018/01/living-with-an-invisible-illness/

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4 thoughts on “Living with an Invisible Illness & Mental Health Ish: Because I’m Not The Girl I Used to Be and Here Are Four Reasons Why

  1. Positively Alyssa says:

    I am so sorry I am so late with being able to read your amazing post and then leaving a comment. This really was absolutely brilliant and incredible true! I live with MS, which is an invisible chronic illness. The pain gets lonely and so does the illness. It often seems like NO ONE understands or even cares to even try. Life gets difficult and I do my best to push through it all. The harder part is when I have to continue to take care of everyone else with no one offering to do the same. I think this causes way too much frustration and hostility. Thank you for everything you wrote in this and thank you for being the fantastic person you are!

    Liked by 1 person

    • maceybee says:

      lover! you never have to apologize with me. i read about some of your ms experience on your blog. and let me say, you are a freaking warrior. i don’t know too much about it but i know it’s painful debilitating and all consuming. i’m so sorry you have to deal with an invisible illness too. no one can ever understand unless they live it. i never knew anything about this life before it happened to me.

      i appreciate your kind words. they mean more than i can even say. right back at you!

      you’re amazing and i miss you.

      💕💕

      Like

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