So, I've been having a really hard time lately. I've had many days this week where I've barely been able to get out of bed. I'm going through both a positive yet very rough patch in terms of my health, where I'm finally able to taper off the high-dose prednisone I've been on for 3+ years. This is a good thing - my Takayasu's is finally less active - but also very difficult as my body is now going through some pretty intense medication withdrawals and I am very unwell as a result.
Something that I've really been struggling with as a result is the disparity between my "public persona" and the reality of what my day-to-day life is like. Sure, most people probably display a different public persona to that of their actual lives. I mean, whose facebook timeline is a truly accurate depiction of their everyday lives? (Also, nobody wants to know what you're having for breakfast every morning. Sorry.) But I think that this struggle is particularly profound for people living with chronic or mental illnesses.
When I'm out, socialising, or posting pictures on social media I give the appearance of having bucketfuls of energy, effortlessly doing it all and accomplishing amazing things. I try to be (or at least look like) superwoman. This is the public me.
But in reality, I take several hours to get out of bed each morning because of my chronic pain, I am usually able to do about 1 thing per day because of intense exhaustion, I often spend hours crying and feeling sorry for myself and most nights I collapse in bed by 8pm. That's a particularly bad day for me, but I really struggle. This is the private me.
What freaks me out most about this is that most people know me as the "energetic, bubbly superwoman" that public me appears to be. She doesn't have struggles or stresses. She's totally confident in herself and able to do almost anything. But private me has different plans, and it's gotten to the point where I fear going out and meeting up with people (other than my closest friends) and then suddenly having to leave due to exhaustion, taking a whole bunch of pills for pain, or suddenly going silent and forgetting what they've said to me. Being asked why I only study part time, or why I can't climb a flight of stairs, or why I'm using a pensioner's card (but you're only 22??). Even small things like why I have to avoid sunlight, caffeine, and people with colds like the plague (um, I could die). It can be embarrassing, scary and downright awkward to have to explain such personal things about myself to people I've only just met or don't know very well.
But one of the things that has been stressing me out most lately is disappointing people. When people reach out to me and I have to say "I can't meet up with you", or I flat-out ignore their messages or emails - hell, even if I ignore people's sewing questions on youtube because I simply don't have the energy to answer them - I worry that people will think I either don't care about them, or that I'm lazy, or I'm brushing them off, because they only know the public me and public me is superwoman. She has time for everyone and can do everything.
I guess the point of me talking about this is because it's something that's been weighing heavily on my mind lately and it's also something I want to raise awareness of. When you live with a chronic illness, there can be such a disparity between your public and personal lives and this can sometimes become completely overwhelming. I also really want to reach out to anyone else also living with a chronic or mental illness to tell you this: You are not alone and you don't have to be superwoman (or superman!). It's okay to take some time to yourself, to be a little selfish and indulge yourself in the things that you love. It's okay to take life more slowly. Whether this is working less, not going out as much or dropping a subject at school or uni - it's okay to take life at your own pace. (Honestly, this should apply to anyone going through any kind of a tough time).
So right now, I'm working more on looking after myself, not being so productive, and not feeling so guilty about it or worried about disappointing people. If I have to reschedule plans, ask for help, take time off uni or even take some time away from blogging (though blogging actually makes me super happy so don't worry too much about that one), that's okay. It actually doesn't reflect on me as a person.
And for people who are fortunate enough not to struggle with these things, I urge you to be kind and understanding with everyone - because everybody you meet could be battling something you cannot see. Lastly I'd encourage everybody to read this article from " But You Don't Look Sick", particularly if you have or know a person with a chronic or mental illness.
But some days, dressing up and taking photos is exactly what is needed to help me feel okay. So here's what I'm wearing today!
Outfit details:
Top is thrifted
Skirt is thrifted (The Red Cross)
Socks are from Tutuanna
Shoes are Naot Kedma's
Much love and stay happy,
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Isn't this the reason why mental illness are labelled as invisible disabilities? I feel that at times, people can react far too personally but ironically once the tables are turned, that's all they demand for z. Look out for yourself because you know yourself best
ReplyDeleteWww.whimsicalzoo.blogspot.com
I can relate to this, and it made me feel better to know I am not alone with my feelings. Thank you <3
ReplyDeleteamazing post, Annika <3
ReplyDeleteI think this post has highlighted a lot of important things people need to remember, which they may not have even considered when contacting someone and getting a non-response, or when someone has to cancel plans at the last minute. I'm glad you brought attention to this, especially the typical response someone under the age of 30 would receive when presenting a pensioner's card (this has to change!!)
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Thank you so much for this entry! It's exactly what I needed right now. I'm struggling with mental illness and the guilt of not being able to do certain things. You're doing a great job! Take care!
ReplyDeleteI struggle with chronic illness, too. Thank you for putting yourself out there. <3
ReplyDeleteYou are superwoman! Thank you for this post, having lived with mental illness for a long time I can relate. You keep doing you because you are awesome!
ReplyDeleteYour timing is impeccable. It is sometimes good to have a reminder that I don't have to be superwoman. Mostly this was a wonderful reminder to have more compassion for myself. I get lost in the sea of guilt so easily, think that I'm a bad person for not getting as much done as others, or that I'm undeserving of the things I have.
ReplyDeleteThe Spoon Theory was a wonderful read. I could perhaps say it's even harder when one has a mental illness, because most people will scrap that as laziness or lack of motivation or whatever. With autoimmune disease at least you have something concrete to tell people, that your immune system is attacking your body: they will see it as an actual illness. With mental illness it's just... "But you don't look depressed. You're always smiling." Yeah, I don't look depressed. I get stuff done. I smile. I joke. I look normal to most people. But just because I'm not lying in a heap in my bed doesn't mean I'm not depressed.
Most of the people around me have no idea how difficult it is for me to get stuff done, how much energy it requires to go to class, study for exams or write a paper. Four hours of class requires the rest of the day off because I'm exhausted. But the rest of the day should be spent finishing that paper that's due soon, or studying for that exam that's coming up in less than a week. Only I don't have the energy to do that. Or the mental capacity. Because guess what, depression affects your hippocampus, so you can't remember things! My short-term memory is crap compared to what it used to be. And trying to study, which sort of requires one to remember things... well. Not so easy.
Okay, this turned out to be a long rant, which wasn't really my intention. But anyways. I'm glad you decided to show this side of yourself, because it gave me a momentary pause and allowed me to have a bit of mercy on myself.
I relate to this so much, I suffer from a severe mental illness and on the one hand I want my online persona to be my 'escape' where I'm the version of me that would be without. But on the other hand I feel like I'm lying but also worrying about alienating everyone if I do talk about it. It's such a difficult line to tread, even more so in real life situations, thank you so much for being so open about it ❤️
ReplyDeleteI think it should be okay to not have to give a reason when you don't want to but societal rules dictates otherwise. But it's good to be open about these things too, so that the taboo of chronic and/or mental illness breaks down. Thank you so much for sharing. It takes bravery to be so honest.
ReplyDeleteHugs, sweetheart. Your health comes first, both physical and mental. I've also been struggling with mental illness and it's amazing how many people don't take it seriously. Don't worry, we blog readers will be here for you when you're ready - rest as much as you need.
ReplyDeleteBeautiful post. Thank you so much for sharing your struggles! You are appreciated!
ReplyDeleteChronic or mental illness are difficult to cope with, specially if you have to maintain a public persona :( but girl, you're great! I really hope this post helps more people to understand that is right to look after yourself.
ReplyDeleteRest as much as you need and remember you're not alone! :D
xoxo
http://www.teapotsandfrills.com
I always try to keep in mind that watching someone on YouTube is only five minutes of their life. Reading a blog post is just one quick snippet from somebody's day. We don't always get the whole story and we shouldn't make assumptions based on only what we can see. What are those content creators doing the other days of the week when I don't see them? Certainly they're not running themselves ragged as we see them in their internet space for a few brief moments. (I know I'm not only the person in my blog posts!)
ReplyDeleteI love it when people can share such honesty with us. You are not alone in your struggles and your words are greatly appreciated. Thank you for taking the time to write it and put it all out there, Annika! :)
-Hannah | The Outfit Repeater
Great post, thank you! :)
ReplyDeleteI can't express enough how much I appreciate this post. It's good to be reminded we are not alone, and that our online superheroes face struggles too. The next time I look at some area of my life or home and begin to berate myself for "not accomplishing much lately", I will remember this post and tell myself that whatever I did (or didn't) get done today is precisely the perfect amount.
ReplyDelete****Hugs...low- energy, long-distance, non-contact hugs, but Hugs nonetheless****
You just do whatever you have to do to be healthy! Any rational person will understand. People put the things they want others to see online and no online persona is a 100% complete representation of a person's life. If someone doesn't understand that, that's their problem! I'll always enjoy seeing what you post even if you have to take blogging more slowly. Everyone has problems so we should all be kind to one another!
ReplyDeleteJamie | PetitePanoply.com
I'm sure I'm one of your older readers, but it just guts me to see so many wonderful young people immobilized by chronic illness, either physical or mental. My daughter has a chronic illness that has sidetracked her life, and it is so hard for her to see her friends living a life of which she is physically incapable. So I tell you, as I tell her, that your path is nonlinear and unique, and you need apologize to no one for doing what you must to be as healthful as possible. Good thoughts to you from the Pacific Northwest of the USA.
ReplyDeleteYou're so beautiful, Annika <3
ReplyDeleteRachel
I think anyone that thinks blog lives reflect identically to real lives are a little dumb! Haha.
ReplyDeleteI can't imagine what it's like to be in so much pain, and it sucks to hear what you have to go through. But you are awesome!
Chloexx
I'm almost in tears reading this, it's so applicable to my life right now. I'm only doing three units at uni this semester, and next i'm dropping back to two so that I'll (hopefully) cope with placement on top of that. I had to move back in with my parents because of my illness, which was really hard, and for a few months there I felt like a failure because of it. But now I know, I'm not a failure! Since moving home and relieving a huge amount of financial stress and physical stress (vacuuming and cooking dinner are HARD with debilitating fatigue and joint and muscle pain!) I'm the most well I've been in three years and able to actually enjoy and excel at uni because of it! I overdid it a few weekends ago though, which looked great on all my social media, but it put me to bed for a couple of days, and when I got back to uni I couldn't take the stairs with my friends, even though we were only going to the second floor - I was in so much pain even after painkillers that I had to lean against the wall in the elevator. My friends didn't quite understand this though - they saw a smiling face with red lipstick on above a well-dressed, young and fit looking body. That had no idea of the pain I was in, the suffering that lupus brings, or the front I put on every day to lead some semblance of a normal life.
ReplyDeleteI hope the withdrawals subside soon. I always hate the periods where I'm dependant on prednisone, and I'm glad you're finally able to come off it. Thanks so much for sharing about your chronic illness publicly. It warms my heart to read your post and know you're spreading kindness and awareness xx
Gurl you are still super productive!!! I major in film and man, editing a 5 minute video takes FOREVER! Why? Because you should be watching as you edit, and watching it over and over and over and over... even when you export it, to make sure there aren't any glitches. Anytime I see a Youtuber who uploads several videos one week, I don't know how they do it (oh wait I do, they don't do any edits, or have a staff)
ReplyDeleteAnyways, I personally don't have any major medical issues, but my mother in law has an autoimmune disease (Hashimotos) and I remember when she was diagnosed (I was living with them at the time). It took her forever to go to the doctors because she felt tired, but figured it was her 4-5 hour commute + full time job. And when she wasn't working, she often took trips to Europe too. Now that she knows of her illness she scales back, but point is that when she would say she was tired everyone just poo-pooed her and said she did too much.
I have many friends and family with invisible diseases, and I guess I have one (asthma, though I only get questions when I can't do cardio, which puzzles people since I run often and for long stretches, but I do it VERY SLOW) But I know people with depression, schizophrenia, hypothyroid, lyme disease, auto immune, anorexia, etc, etc. I know how much "you don't look..." statements are hurtful. And I avoid them even when I don't know the disease.
Keep doing what you do, girl. Take life at your own pace. My nana used to always say to me "your health is your wealth" and she was dead right. Take care of yourself and the rest will take care of itself. The people who follow and respect you online will understand if you don't reply or videos are few and far between. Much love from Ireland!
ReplyDeleteI really needed to read this today.
ReplyDeleteI've been struggling with mental illness (depression and eating disorders) for a big part of my life, but it's become really bad over the last three years. It's difficult to tell people why I'm not coming to events, or why I don't respond to social situations in a way that's considered "normal", or when I have friends staying over and they ask me about my medication. None of my struggles reflect in my social media, and most people who only know me online or casually have no idea that anything is going on.
But at the end of the day, it's best to take care of yourself, and do things to the best of your abilities. That includes how much you share of yourself and your struggles with the world. People on the Internet can be cruel when you show a very vulnerable part of yourself because they just don't understand.
I hope the withdrawals get better soon! Much love and strength to you.
I just wanna say it's ok to have days like this even if you are healthy, everyone needs time for the. Love your blog, instagram and youtube. Take care <3
ReplyDeleteAmazing post!!
ReplyDeleteLoved the earrings too!
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