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What It Was Like Taking a Shower as a Patient in the Hospital

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Since I had been admitted into the hospital I had needed assistance putting on my clothes and most of all taking a shower. After a few days, I could even smell me. You know it’s bad when you start to miss that distinct hospital smell. Lying there unable to move my left side, every daily task was a feat, even trying to put a new blanket on my shivering legs. Never did I imagine this would be my life at 26, two months before my wedding.

The first time that my nurse told me I was going to be taking I shower, my mind was like a Rolodex going through the possibilities of how I was going to do this on my own. As it turned out she was there to help me. They make those bathrooms really big for a reason, I was finding out. I had to sit on a chair because I couldn’t stand up by myself and for safety reasons, everyone there was really big on safety. I was very self-conscious just sitting there naked. I could only wash one side of me due to the fact that my left side wasn’t working. She left me so that I could have a bit of privacy and be alone with my thoughts. Over time, this would be where I would allow myself to become vulnerable and show my emotions. I would have my moment to myself to cry for five minutes each day and let out all of my pain, fear, and frustration for what was happening to me. I would just let the water run down my face and with each time the running water would hit my eyelids, cheekbones, and lips, I would hope that it would move my eyelid back to its rightful spot and loosen the left side of my lips so that it would move again and I could eat a McDonalds Happy Meal.

After about three days of doing this, I could manage to stand by myself with supervision. I would also need someone to help me shampoo my hair. Trying to squeeze the liquid out of the bottle one-handed was tricky. After a while, I got pretty good at washing my hair and face one-handed. I would do this when I was on the neurology floor at a larger hospital I had been shipped to for more tests and then back at the local hospital in my town. I would flip an empty garbage can upside down so that I could put my hair and face supplies on a flat surface while sitting in the shower chair and then would be able to squeeze the liquid on my face or head with no assistance. It let me continue to be independent, which I longed for.

It wasn’t until I returned to the original rural hospital I was at that a turning point happened for me. I lost dignity and never felt more of being “on display” for everyone to see in my life. It was a Saturday morning and I was transitioning into the therapy program where I would have sessions for at least four hours each day. I had a schedule that I had to go by. Up by 7:30 a.m. for my medication and breakfast and therapy sessions starting at 9 a.m. each morning. There was a whiteboard in my room that broke down each of my appointments so I knew what was happening each day and when.

That Saturday morning I saw that I had an occupational therapy (OT) appointment at 9:30 a.m. My nurse and I discussed a plan for showering. She was so kind and made me feel like a person. I told her what I had been doing, that I use both the chair and railing, but I can stand, too. I like to shower by myself, though. For me being a 26-year-old engaged female, this was a big step, as I think it would be for any person losing their independence, which is extremely disappointing and mentally exhausting. She trusted me. She talked to me like a person. We shared jokes and she wasn’t afraid to be blunt with me if need be.

So that morning I started my routine. I got up an hour before my session started, just enough time to shower and get dressed. I remember this was the first morning I put my sweatpants and sweater on by myself. I was smiling from ear to ear. I had never been prouder of myself, almost in tears because of this great accomplishment. It might not have seemed like much to some but to me, it was like I had climbed Mount Everest. Never mind that it took me 20 minutes to dress myself alone, not to mention brush my teeth and make my bed. I was ready for a nap. Every movement was exhausting. It was the fact that I did it myself without the help of someone telling me, “OK, one foot in and now the next foot.” I was taking back my independence, slowly but surely.

However, to my surprise, my dignity was about to be ripped away again. I felt like that accomplishment that I worked so hard for, pulling and tugging trying to find the opening of the sweater, was all for nothing. An OT assistant walked in and introduced herself, saying that the supervising OT on my case instructed her to have me shower in the makeshift apartment they have on the floor. The apartment was used to safely teach people how to get in and out of a bathtub, learn how to cook again using utensils and apparatuses and also safely shower with rails. I told her that I was going to shower after we had our session because I thought we were going to work on my non-working hand. I also told her that I can and have been showering by myself. I use the chair in my bathroom. She said that these were her instructions.

Clearly upset by this, I wondered if I could use my own bathroom, something I would be familiar with and not have to leave my room. She said I had to use the apartment’s shower and if I did not want to complete the session and the task I didn’t have to if I was uncomfortable. I didn’t know what to do. No one had done this before. I thought that this is the process and to get better I have to follow it. I had to trust the process to get better, but didn’t know why the OT didn’t assess my abilities first to see what I could do. Holding back my tears, I wheeled my walker with her down the hall to the apartment’s shower. I looked down the entire time not making eye contact with anyone.

I know that she was just doing her job, but why wasn’t she listening to me or at least get the supervising OT to properly assess me to see my progress and abilities? I felt violated, dirty, even more ashamed. She had to watch me undress and then shower, peeking behind the curtain the whole time, like I had committed a crime. I was so self-conscious. I know this is her job and she is professional, but all that I could think of was that is she judging me looking at my hairy armpits (shaving only one armpit makes no sense) or my purple feet. We made small talk until it was over. I was 26 years old. I feel like at any age this isn’t easy, but there was no second thought as to procedure over compassion or patient care over policy. Doing this assessment in my own room and shower, where I would be showering for the next five weeks, would have made no difference.

Over the progression of the next few weeks, I learned to let things go about being self-conscious about my body. I would be getting dressed and the nurse practitioner would walk in, not seeming to care if I told her to please give me a minute. I know everyone meant well, but respecting privacy and giving people the dignity they deserve goes a long way. The “shower incident” was traumatizing for me, partly because I was hypersensitive and also because I felt I had made a lot of progress to get to the point to be able to get dressed by myself and also shower by myself. Being watched and not trusted to shower again brought me back to a dark place of self-doubt and defeat about my illness. I needed that time in the morning to power through to get in the mindset, to hear myself say, “Katie you can do this, Katie you are strong, Katie you can beat this.” If I didn’t allow myself this time to cry and let out my emotions for five minutes each day then I couldn’t focus on what I needed to do and that was to work on getting better. There was more of a mental component to get through being in the hospital than I ever expected.

Healthcare workers have important jobs that impact patients for the rest of their lives. Their actions and how they present procedures determine how someone mentally can push through their recovery. If you can do anything at all, let patients have as much dignity as possible, whatever that may be. Being naked in front of people you don’t know wasn’t something I had on the top of my bucket list. We rely on your expertise to get through this traumatic experience. Ultimately, this moment will stay with me for the rest of my life. I showered with the door locked for months and continue to do so, in fear that someone is listening in on the other side or wanting to burst in at any moment. I relied on my health care team to make it through my experience; to survive. Showering is a sacred and private act for an individual.

I know that safety concerns and hygiene are a part of any healthcare workers job as well as a big concern for hospitals. I also understood that I had to show a therapist that I was not struggling and they needed to see it for their own eyes. Providing patients with more comfortable settings, like their own bathroom to complete these intimate tasks gives them more dignity and compassion care when they are feeling lost and emotionally overloaded from a diagnosis. Just listening to a patient’s concern over why this must be done, not questioning but educating the importance of the procedure ensures that they feel supported and not blamed or shamed.

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The Lesson I Learned After Party Planning With a Chronic Illness

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Last night Nick and I hosted a Murder Mystery Dinner Party for eight. We cooked and served a three-course dinner, transformed our room into a tropical island paradise and entered our character roles with great homemade costumes. Normally, this morning – the morning after – I would be feeling very sick and would have to stay in bed for at least the rest of the day. This morning was different. OK, I had a terrible night’s sleep, but that’s pretty normal, and I’m feeling exhausted (but pleasantly so), but there was one difference.

I let go.

I would normally have made all of the food and drinks myself, cleaned the house from top to bottom, and scoured the earth for the correct costume. Having had a good think about the potential consequences after the party and just before Christmas and the impact it would have, I made some challenging changes to my behavior. I asked for help. It wasn’t easy, I like to think I can do everything; I like to think I know my limits. Rationally I know I can’t do everything and that I never stop at my limits and consequently make myself feel worse mentally and physically.

We asked each couple to bring something. We prepared easy one-pot meals the day before. We chose costumes that were easy to put together and wear. The decorating became a fun morning. I actually bought and threw away disposable plates and glasses (not happy about that bit but it was convenient and saved work the next day).

A close friend, one of the guests, has just been diagnosed with a chronic illness and after a chat on the phone I realized the party was about a group of friends getting together to have fun, not to check out my housekeeping skills. So I did a quick tidy and left the rest. Guess what? I didn’t worry about it and had a great evening! I think I’ve learned a valuable lesson.

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Thinkstock photo by g-stockstudio

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Why I Rub My Stomach Almost 24/7

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We all have habits. Whether it’s leg shaking, finger tapping or flicking our hair… they exist. We do them for a reason but we’re not always aware of the reason.

I… rub my stomach. There, it’s out in public.

That’s my habit. I do it pretty much 24 hours a day. It has a scale ranging from simply touching my stomach to rubbing as if I’m playing an electric guitar alongside a
heavy rock band. My reason is because I’m in pain and anxious. Now, if you have a particular vision of this occurring in your head, it either looks hilarious or silly, right? Don’t worry, that’s fine. I think it looks silly and hilarious too.

I get the whole “Are you hungry?” “Have you got an itch?” and “Are you pregnant?” I get that it looks strange. I’ve also been asked in the past if it has any sexual connotations… I won’t write my response here…

There have been times I’ve been videoed without knowing, and there I am, going for it without evening knowing what I’m doing. I’ve been on national television and guess what I was doing? Yep, you’ve got it. Talking and rubbing my stomach. I guess I’m all right at multi-tasking then?

I met Robbie Williams for the very first time in 2001 when I was 7 after winning a Pride of Britain Award. It was a complete surprise, but everyone around me knew I was obsessed with him so this was a dream come true. We spent a lot of time together in London. I remember him asking me why I did it as he noticed me doing it throughout the day. After explaining, he simply picked me up to save my energy (I was still walking a bit to this point and in a cast) and accepted it. Publicity and photoshoot time. There are numerous photos of us so take a wild guess how many of them show me rubbing my stomach? Yep, pretty much all of them. Still makes me laugh to this day.

Ever since I was diagnosed with cancer, my parents noticed I would rub my stomach. Funnily enough, one of the tumors grew within my stomach in that exact location I touch. Coincidence?

I rubbed it as a baby and as a toddler. Doctors said it was a way of self-soothing when I was in pain.

My amazing friend, who became my best friend, told me not she thought I was just constantly hungry. This made me giggle. I’d be in the dinner line, just there, doing it and she noticed. Maybe that is what some people thought… and that’s absolutely fine by me.

It continued throughout reception year. I was diagnosed at age 5 with neuropathy secondary to the cancer, meaning I was and still am in constant pain. The habit became more and more frequent to the point I’d do it for most of the time I was awake.

Going into a wheelchair as a child due to the pain becoming intolerable and muscles slowly disappearing, I’d sit there thinking, “Is this really how things are going to be for the rest of my life? Sitting here, in pain, with a silly habit, lonely and spending the rest of my life in a wheelchair?”

Throughout my education, I was bullied for this habit simply because I act differently. I’d always make sure I would sit at the back of the classroom in an attempt to reduce my anxiety and to prevent people from noticing, but that didn’t stop the bullying. Even some of the teachers thought it was weird. No one knew why I’d sit there rubbing my stomach but I knew why… I was in pain. I already felt “different” being a wheelchair user within a mainstream school and yet this habit just added to my constant anxiety
of feeling “abnormal.” I felt isolated, ashamed and embarrassed.

Even now as a 23 year old, I still do it! A friend of mine notices this habit and every other silly thing I do. For example, we could be in a shop and he’ll ask if I’m all right… because guess what I’m doing without thinking? Yeah, you guessed it.

No one really makes a big deal of it now. Why? Because it’s not a big deal. If anyone ever did say anything, I’ve learned to stick up for myself and say what needs to be said, but people do notice and mention it with some asking, “Are you always hungry or something?” Of course, they notice, it’s something away from the stereotypical “norm” of how people act. But why should this be a problem for them?
I remember a few weeks ago, someone brought up my habit in front of around 30 different people. Five years ago, I’d of been so ashamed and embarrassed that I’d have gone bright red, started sweating and left the room. But something different happened that day. At that moment in time, I no longer felt embarrassed. I openly explained all of this to them. Why was I not embarrassed? Because as I’ve already said, it’s not a big deal. I have this habit that many psychologists have tried to work out and stop me from doing, but why should they? This is personal to me.

Others don’t understand how much anxiety I’m experiencing and how much pain I’m in 24 hours a day, seven days a week, but that’s OK because they don’t need to understand why I do what I do. I know why I do this. I can’t physically stop myself from doing this. I do it when I’m anxious, panicked, happy or sad. It’s a part of me. It doesn’t solve my anxiety, but it’s not hurting anyone, it’s not illegal and actually, it stops me having a massive meltdown in front of people. It’s all to do with the psychological benefits it brings. On the surface, I could be smiling, but deep down, I’m struggling.

My chair gives me the independence my legs have failed to provide me with. The cancer doesn’t define me, the chair doesn’t define me and this silly habit doesn’t define me. It doesn’t make me abnormal either… it’s just another one of Rachel’s “quirky traits.”

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Thinkstock photo by Christophe Bourloton

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What Home Means to Me as a Person With a Chronic Illness

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From a young age, my parents made our home an oasis. My childhood house will always be a very special place to me, but it wasn’t so much the house itself. It’s what represented.

It was a place of rest after an exhausting day of trying to maintain a happy demeanor through weakness and pain. Our walls were a judgment-free zone, where lying on the couch in a noticeably bad mood didn’t make me lazy or unfriendly. It was a sanctuary for healing when I felt broken and alone. A quote from one of my all-time favorite movies, “Under the Tuscan Sun,” sums it up perfectly: “What are four walls anyways? They are what they contain. The house protects the dreamer.” 

However, in their infinite wisdom, my parents never made our home a permanent escape. It wasn’t a place where I could hide or cower from the challenges of living with a chronic illness or just life in general. It wasn’t a place where the excuse of not participating would hold up. I was expected to engage fully, but when the day had been long and the world seemed cold, home was a place to rest and regain my strength for the battle ahead.

It was a place where the oddities of living with a fatty acid oxidation disorder, such as drinking massive amounts of Gatorade and eating multiple doses of oil-infused yogurt wasn’t a spectacle. It was the one place in the world where those practices were considered normal with no additional explanation needed. Having a place where the ins and outs of my disorder were known by everyone was a relief. Outside my home, daily interactions about my disorder involved questions followed up by even more questions.

Everyone and anyone had a standing invitation to our yearly Christmas Eve party, which is one of my favorite holiday traditions. As my parents often said, “It is a place for the people who do not have anywhere else to go because no one should have to be alone.” Our home was always filled with people — old and new friends and people with nothing and everything — who needed a place to laugh, smile, joke, eat and be surrounded by others who just “get it” and accept you, regardless of their circumstances. It is there that I learned one of the most important lessons of all: A home is meant to be shared.

For this reason, especially since as I’ve gotten older, home has become increasingly more important to me. I’ve always found myself searching for a piece of it in almost every aspect of my life: my family, my friendships and relationships, my career, my hobbies and even down to the non-obvious things such as the clothes I wear and the words I speak.

Eventually, I had to leave that original home to go to college and then for my first apartment of my own. But that feeling and yearning for home never left me. A home as warm and comforting as the one originally created for me was hard to come, but I wouldn’t settle for anything less.

This led to me being heartbroken more often, and possibly more easily, because I seek out that deep part of “home” in everyone I meet and everywhere I go. Sometimes, it’s just not meant to be, which I tend to take way too personally. Not all people share my comfort level with complete, and sometimes overwhelming, transparency. It took me a long time to get this way myself, as I am sure anyone with a chronic illness can relate to. I can be self-conscious about it, but eventually I realized it’s a “human thing” to be messy, scary and complicated, not a “chronic illness thing.” There is no point in hiding that part of me from the world because it’s a part of me that will never go away, just like my illness is never going to go away.

I often ask myself, “If someone doesn’t know about my illness, do they really know me?” The answer is always no. I agree that it can be hard to let people in, especially when you don’t know how theyll react, but it is better to have them know and walk away then have to hide a crucial part of yourself — at least you know the truth.

At the end of the day, though, others have experienced different lives that have shifted their inclinations elsewhere. I accept that, but in first attempt, I always try to gain their trust, so they know it’s OK to share those messier parts with me. I don’t see these parts as flaws, but rather as triumphs — proof that a person has survived hard times. But in the end, there will always some who don’t want it to be found. I have learned, somewhat reluctantly, that I must accept that, too.

Home isn’t always easy to find, and it is certainly not always easy to keep. How do you define home, never mind find it and make it last? To me, home isn’t necessarily so much about comfort, especially for those of us living with a chronic disorder, since the concepts of comfort or even stability may never be completely possible. However, I’ve realized that in no way means home is lost for us.

I also discovered that home can never really be “found.” It must be built, rebuilt and patched up often — from within. Home is a real part of everyone and everything we come across, but it takes strength and dedication to seek it out because it isn’t easy work. And a lot of the time, it can be messy, scary and complicated due to the fact that it’s the one place you are vulnerable with your defenses down.

For me, seeking home requires finding love from myself and others, even in the most bitter and angry parts of the soul. It’s accepting that my home may not be, now or ever, be picture perfect like something you would see in Traditional Home magazine, but that doesn’t mean it’s any less meaningful or beautiful.

When the lights are dimmed, the gaze of the camera is turned and the expectations and commitments fade, the piece of home built within ourselves and how we share it with others is what’s left. Even though that part of me is flawed, unpolished and unpredictable and maybe even some days seemingly unpreventable, it’s the truest part of who I am. That is where I want people see me and love me because that is where, no matter what happens in life, I will always need to see and love myself.    

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19 'Subtle' Ways Chronic Illness Affects Your Daily Life

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Having a chronic illness can affect your life in many ways — from being unable to work or forcing you to skip out on a social life to dealing with painful physical symptoms that leave you in the hospital or at home for months. Chronic health conditions can also affect your daily life in more subtle ways — ones healthy people may not even consider or notice. Friends and family may not realize how tricky things like getting dressed, pushing a shopping cart, or taking a shower can become when you live with health challenges.

We wanted to know how chronic illness can change your life in less noticeable but nonetheless challenging ways. So we asked our Mighty community to share some subtle effects their illness has their daily life. While others may think the things you find challenging are “small,” they are anything but when you’re dealing with a health condition.

Here’s what our community told us:

1. “My wardrobe is very simple. Nothing that I may have to pull on or has tricky fasteners. No hard lines like zippers or thick belts. Items can’t be too heavy, and have to breath or let me easily adjust my body temperature.”

2. “Sometimes being in a social situation or even just shopping sends me into a panic. Not because of anxiety but because of the adrenaline that pumps through my body, the fact that I can hear, see, smell and feel everything 100 times stronger than I should be sensing it. An overwhelming urge to get away and be alone in the quiet safe space I have made for myself with myself, overtakes me as my eyes dart around the room looking for an escape. Sometimes this makes me snap at people, or act shy/stuck up. Most people don’t understand what’s happening and think it’s just how I am, or don’t notice at all.”

3. “Plans can change almost instantly with no warning. Not necessarily subtle, but one small problem can lead to another, to another, to another…”

4. “There’s a lot of compromise between myself and others, and myself and myself. While compromising with others is more embarrassing, compromising with myself is harder. It’s hard to admit I have so many limits, and harder to follow them. But I know if I don’t follow my limits one day, I’ll be even more limited the next.”

5. “I can’t go out unless I know where all the bathrooms are.”

6. “I can’t eat certain things if I’m alone. I can’t cut things like steak and pork chops by myself right now. I need someone else to do it. While I am at home, my father has to cut everything into fairly small bite-sized pieces. If I’m out with my boyfriend, I have to hand my plate to him so he can cut it up. You wouldn’t think something like that is an issue.”

7. “A drop in temperature changes cause my pain level to soar through the roof. I can’t go into walk-in freezers at Costco or it will cause me pain. If the car is warm and I go outside in the cold for even a few minutes it causes my pain to creep up and stay that way.”

8. “I am always thinking. Everything I do: tying my shoes, sitting down/getting up from the toilet, taking the two steps up to my front door… even how I position myself as I fall asleep. I am always super aware of how I’m moving my body. When I don’t pay attention, that’s when my joints slip out of place.”

9. “My fingers or hands hurt so I make choices of what to type or scroll through to use them as little as possible when they really bother me.”

10.When something as simple as sitting the wrong way or standing up takes effort, nearly everything becomes a labor or a chore. There is absolutely no room for spontaneity.”

11. “I break things almost every day because I drop things all the time.”

12.I can’t walk as fast as my young children. I’m having to constantly ask them to slow down for me when we are at a store. Also, stores without shopping carts are a no-go.”

13. “Picking out clothes is a much different ballgame. I have to consider being able to access my feeding tube at any given moment. If I want to tuck in a shirt, it has to have some kind of opening (such as buttons) in the front that allow me to be able to use my tube throughout the day.”

14. “I let my nails get too long because my hands shake too much to cut them.”

15. “I often forget that most people don’t have to set alarms for meds.”

16. “All the things I used to take for granted, I now actually have to think about. The stairs I go up and down every day at home and at work make me stop and think every time, ‘Which knee is my strong knee today? Should I start with my strong left knee or my right foot that Doesn’t have plantar fasciitis?’”

17. “I will usually lean against a wall, if I can, when I’m standing up because it tires me out so much and causes pain.”

18. “Putting my bra on! I have Ehlers-Danlos syndrome and risk popping a shoulder every time.”

19.The simple things can be the hardest sometimes. Just the act of pushing open a door is tedious and exhausting, and you don’t realize how weak you are until you go about these daily tasks.”



19 'Subtle' Ways Chronic Illness Affects Your Daily Life
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Feeling Alone With My Chronic Illness, Even When I’m Surrounded by People

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The worst part of battling an invisible chronic illness to me is the constant feeling of loneliness, even when there are people all around me. The feeling of helplessness, fear and anxiety — and knowing this feeling won’t fade no matter how many people are in the room.

Living with a chronic illness is hard. It feels to me like it’s always take, take, take, never give. It can be hard for others to fully understand what I go through just to stay afloat. It’s a lonely life seeming OK on the outside but feeling beaten, bruised, broken and hopeless on the inside. When trying to explain what it feels like to be in my shoes, I found the only way is to be brutally honest, even if they can’t fully grasp what’s happening to me.

Alone to me is feeling trapped in a body that is failing and I can’t do anything to stop it. I try to scream, but no one can hear me. It’s a daily struggle fighting what these illnesses are doing to my body without permission to do so. Running to the bathroom in hopes you can make it to the toilet this time instead of throwing up on yourself again. Knowing you look fine on the outside when you’re dying on the inside. When the judging never stops while you try explain to the 50th doctor what you are dealing with, having to defend yourself when they accuse you of being a drug seeker. The embarrassment of explaining to your boss why you called off for the 15th time… knowing full well no one can truly understand what it feels like to be battling something that isn’t curable. Trying to not get angry when people say, “Oh you are sick again, maybe if you took better care of yourself you wouldn’t be dealing with this.” To me, that is the true definition of feeling alone.

I know many of you are feeling or have felt the way I do, and I want to assure you it’s OK. It’s hard to admit these feelings because you are trying so hard to appear “normal.” I can tell you from experience that it gets so tiring just trying to appear fine. After years of battling in silence, I realized it’s OK to admit I am scared, hopeless or just downright overwhelmed.

And for the loved ones, friends, or significant others who know someone with a chronic illness — try to be as patient and understanding as you can possibly be. In my experience, trying to put yourself in our shoes can show us you are truly trying to understand what we are feeling. Because although you may not be able to fully understand what we go through every day, you being here, holding us in times of weakness, loving us when we feel unlovable, and making us laugh when we have been crying for what seems like forever is honestly the best way you can help us when we feel so alone.

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