woman with an injection

The Bravery I Found in Giving Myself Weekly Shots

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I have this photo of all my meds that I kept meaning to post to Instagram.

In the past year and half, I was diagnosed with both asthma and rheumatoid arthritis. I shared vulnerably on my own blog about the scary symptoms and frustrating process that led to each of those diagnoses, but I still had a lot of people asking questions, and I wanted to help them understand how my life had changed.

One of the biggest changes was all the prescription medication and supplements I was suddenly taking. Before asthma and RA, I was the type of person who didn’t always take something for a headache and only occasionally remembered my vitamins. Taking a fistful of pills every morning was a real challenge for me.

One Saturday morning, I was refilling my pill sorter, dropping tablets into each compartment–plink, plink, plink—like some twisted game of Mancala. I had prescription bottles spread out all over the table, and was matching that day’s pills to the bottles, the only sure-fire way I’d come up with to make sure I didn’t miss any.

“This is my life now,” I thought to myself as I surveyed the scene before me. I snapped a picture with my phone and hung onto it for weeks, trying to figure out the best way to caption it to help people in my life understand what I was going through.

The meds were helping me, and I was thankful for them, but managing all of them was one of the biggest challenges of my new life with chronic illness. I struggled to find the words to explain it, though, so I just kept looking at the picture and thinking about it, and then all of a sudden, the pills weren’t the worst part of my medication routine.

“I think we need to try injections,” my rheumatologist told me at my most recent appointment. I wouldn’t have to come into the office, though, he reassured me. They were injections I could give myself at home, with the same type of needles diabetics use for insulin.

I think I asked a couple of questions, but I don’t really remember. I was focused on keeping my composure long enough to get out of the office and into my car, where I totally lost it. If I’d felt a little weird and intimated when I had to use an inhaler for the first time, those feelings paled in comparison to this.

I cried the whole way home. I thought about all the scary ways these diseases have pushed me, all the hard things I’ve had to go through over the last 18 months, and this just seemed like the last straw. I was terrified. There was no way I could give myself shots. I just couldn’t do it.

I got home and talked to my husband, which helped, and then I called my sister, who is a pediatric nurse. “It’s going to be OK,” she told me. “We teach 8-year-olds how to do this at the hospital. You can do this.”

I still wasn’t so sure, though, so I went over to her house the next day and had her show me how to draw the medicine into the syringe. Then I let her give me the shot.

A week later, it was just me and the needles in my bathroom. I measured out the medicine just like my sister had shown me and then winced and pushed the needle into my skin. It didn’t feel great, but it wasn’t the worst pain I’d ever been in, either.

And more importantly, I did it.

Afterward, I sent my husband to the store for ice cream. I had earned it.

The next week, I gave myself a shot again. I did it again the week after that. And the week after that. I just kept doing this hard thing I had never expected would be a part of my life. It still kind of hurts. It still kind of freaks me out. But it has been, surprisingly, such an empowering gift.

Last night, after my weekly injection, I told my husband, “I just gave myself a shot. I’m not afraid of anything.”

It’s not entirely true, of course. There is plenty that still scares me. But immediately after I give myself a shot, I feel invincible. Like I can do anything.

There will probably be another scary chapter of these diseases right around the corner. So I’m thankful for these shots, no matter how much I didn’t want them at first because they’ve made me brave.

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Thinkstock photo by mabe123

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The Phrase That Has Haunted Me Since I Was Diagnosed With Rheumatoid Arthritis

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“You’re so young to have this.”

That phrase has haunted me since I was diagnosed with juvenile rheumatoid arthritis (JRA) at the age of 18 years old. Over the course of my 12-year ordeal dealing with the ups and downs of RA, I’ve been told this by almost every doctor, physician assistant, nurse, family member, friend, and even strangers.

In the beginning I was numb to it, mainly because I was still really deep in the “denial” phase of accepting the fact that I had an illness with no cure. I never knew how to reply to this statement or if a reply was even warranted. I either just stared back blankly, like a deer caught in headlights or just murmered the word, “Yeah.”

Before I was diagnosed, I was a healthy teenager who grew up playing sports. I wasn’t fully aware of how autoimmune diseases truly affected people, until I experienced it myself.

That all changed four years later, when in college for my undergrad, I got offered an internship as a public relations intern for the Arthritis Foundation in Chicago, Illinois. During my experience there, I was able to learn how it was to work for a nonprofit.

One thing that was a major turning point and learning curve for me was going to Springfield, Illinois to advocate. I met many people my age who were diagnosed with RA and other arthritis-related conditions as babies or young children. Hearing their experiences scared me, as that was my firsthand look into what my life could or would be like in the future. The unknown was scary, as it is with anything we aren’t familiar with. However, there was a level of comfort knowing that I wasn’t alone in the fight. Especially that I wasn’t the only young person fighting, and that gave me a push to not give up hope.

I wouldn’t say I wasn’t prepared at that time, but my worldview and condition wasn’t affecting me as much as it has these past few years. I’ve learned that when people say things that chronically ill people hear all the time, the best response is to just educate. There is a need for awareness, and those who experience this personally or indirectly can be a huge driving force to help make change.

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Lead photo by Thinkstock Images

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The Most Important Question Doctors Never Ask Me

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When you are diagnosed with a chronic illness, everyone worries about your physical well-being: whether or not you are taking your medicine, how your pain levels are, if your blood’s OK, how your liver is doing… You do hours and hours of tests every year to make sure your body is still somewhat functional, at least enough to keep you alive, and yet not one medical practitioner ever asks, “How is your mental health?”

Don’t get me wrong – I know they already have so much on their plate and their main focus is your physical health, but from the time I was 15 to now, almost 10 years later, no one has inquired about my mental health.

The pain and the knowledge your body is deteriorating and will never get better is a lot to handle at any age. But all the worries, fears, sense of loneliness and stigmas combined takes a toll on your mental health.

I have only learned in the past couple of years that the emotional rollercoaster I am on with my rheumatoid arthritis is normal. I have learned this from meeting with and talking to a variety of others with the same or similar conditions.

I often wondered if I was exaggerating all the side effects of this illness. I wondered, should I really “miss” an old version of myself? Is that just feeling sorry for myself? Was I allowed to feel sorry for myself? Was I too sensitive when someone implied I was lazy? And how was I supposed to feel when someone blamed my diet on my illness? These were not questions I was willing to ask my doctor or my nurse.

For the most part I just “got on with it,” but there would be days when I would convince myself I was entirely useless as a human being. That I was a waste of energy and resources on my friends and family. I mean, what kind of 16-year-old girl can’t dress herself? No one told me these were thoughts that most people with lifelong illness experience at some point or another. But then again, I didn’t ask. I didn’t ask because that would make me a “moaner” and that was the last thing I wanted to be on top of “lazy” and “useless.”

Then there would be times when I would feel a rush of anger towards someone’s ignorance. They said the wrong thing or just stood there in disbelief that I, a teenage girl, could have arthritis.

I worried about my future. I wanted a career, a high-flying career. Suddenly I didn’t know if that would be possible. Sometimes I doubted my ability to get through school – never mind college – and then pursue a career. I was terrified I would become a housewife except with no husband or children. I was so unsure of what the future held; it was worse than any horror film for me.

These were all things my mind did each and every day. I questioned, why me? Or wondered if I had caused it, if I had done something to deserve it. I wanted to tell someone how frustrating it all was! How angry it made me feel when no one understood and how devastating it was when people just thought I was lazy.

My mind came up with new questions each day, new things to worry about. To be honest, the mental toll is often worse than the physical one for me. The pain wouldn’t be so bad if I could accept my limitations, if people understood or if the illness didn’t make me feel like the shell of the person I was before. If I could better deal with the emotional side effects of a chronic illness, the physical ones would be much easier to get a handle on.

Mental health is vital, no matter how physically healthy you are, and the world is beginning to see that. It is slow but it is progressing. Having a chronic illness is not the same as having anxiety or depression but it can cause you to develop those conditions, too. You have to look after your mental well-being no matter who you are or what you have or don’t have in life.

I find writing has helped me in leaps and bounds. Not only does it allow me to get everything off my chest, but as I publish it to the public it allows me to connect with others who say, “Me too!” If writing is not your thing, a chat with a friend can do a world of good. You just have to be brave and tell them how you are really feeling.

As the years go on, you learn so many coping mechanisms and little ways to make your life easier, but you also learn how to deal with those thoughts a little better. You learn it is OK to not always be OK. That crying can relieve some of the frustration and that feeling hurt when someone implies you are less than you were is more than justified. That grieving the old you is normal and even healthy and that from time to time you will feel a little useless.

If you accept these feelings and actually deal with them, you will be all the better off for it. Your feelings are not invalid; they are never invalid. So right now, this minute, take a moment or two to write it all down or talk it all out or go scream into a pillow. Whatever works for you. But don’t hide from your emotions – you can’t hide from your illness and you certainly shouldn’t hide from your feelings. You may feel broken, but you have the power to be the strongest you have ever been. You just have to take it.

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 Image via Thinkstock.

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My 'Invisible' Illness Isn't Actually Invisible

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I sat in the doctor’s office while the nurse repeated words like “manage,” “lifelong” and “chronic,” but at just 15 none of it sunk in and I had no idea what all that really meant. I expected to be medicated, sent home with a few days off school and I would feel better in a week or two and my life would go back to normal. Little did I know this was far from the way things were going to be.

Normal is a relative term and suddenly my normal was sleepless nights, needing my younger sister to brush my hair and dress me and needing my friends to carry my school bag off the bus for me. My new normal was being in agony for weeks after one fun-filled weekend of shopping and movies with my friends. My new normal was anything but normal for my peers.

People do not understand the impact rheumatoid arthritis can have on your life. They hear arthritis and assume you have a bit of an ache in your knee and are a hypochondriac. RA is an inflammatory autoimmune disease which affects the joints in your body but also causes chronic fatigue, pain and discomfort and limits your mobility. In other words, it is your own body attacking itself then becoming inflamed in order to heal itself. However, the problem lies in the fact that there were no wounds to heal in the first place.

The pain is one part of the disease that can certainly test you and push you to your breaking point, but it is the lack of true understanding from others that can be the most painful. Rheumatoid arthritis is not something we made up in our heads or something we exaggerate. We smile and say we are fine, and then we cry in agony when no one is looking because we do not want to bring down those around us. So we play a great game of hide-and-seek as we shelter you from the pain we are in.

It is the simple tasks we once took for granted that affect us the most, such as getting out of bed in the morning. I doubt anyone really does this at ease, but now I need to prepare myself as my bones ache and creak as I sit at the edge of the bed. I count to three in my head and take a deep breath, as that is the little routine I have made for myself to ease the pain of the first movements of the day.

Everything is different now. Everything is more difficult, from brushing my teeth to carrying the shopping bags in from the car. The little things people do without a second thought and in mere minutes can be a real struggle for me and, during a flare-up, quite time-consuming.

People don’t see a sick person though; they see a young woman who should be well and able enough to complete these easy tasks. They see someone who is just lazy and can’t be bothered. I may not have a visible disability, but my body does not function as it is supposed to. I have my body, but it is broken.

My illness may seem invisible to the naked eye but really it just takes some time to open your eyes wide and see. You cannot possibly know what every person you encounter on the street is going through and no one could expect you to. But a friend, a colleague or a loved one has the capacity to see what is going on behind our fake smiles and lies of “I’m fine.” You just have to look hard enough, and when you do, my invisible illness suddenly becomes glaringly obvious.

This post originally appeared in Gloria’s local newspaper, The Clare Champion.

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What We Need to Remember About the Loved Ones Affected By Our Illness

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My life changed when I was 15. It wasn’t something I ever wished for, but it happened. I was diagnosed with rheumatoid arthritis, or RA for short. It meant a lot of horrible things: sleepless nights, pain for the rest of my life, limitations my peers would not experience, lots of visits to doctors, needles, medicine and loads of blood tests!

Like I said, it wasn’t something anyone would ever wish on themselves or on another, but it happened, and as I have grown older and accepted my illness, I have learned a little bit about what it has given me. Not only has my illness made me a stronger person and a fighter, but it has shown me how the little things in life are the most important and how family and friends will get you through anything.

Because we feel so isolated, like no one understands our pain and everyone is judging us, sometimes we can forget how much the people we love actually do for us. Will they ever truly understand if they are not ill themselves? No. Will they often say things that hurt us or make us feel as though we are not doing good enough? Yes. But do they mean to hurt us? Do they mean to make us feel like a lesser person? No.

When someone is ill, everyone imagines what life must be like for that person. And I have been there; I know what it’s like. Every day of your life will be tough, you will have to fight and your life will change after becoming ill. But so will the lives of the people around you. Your partner will have to help more, but they will also feel helpless at times. When you are curled in a ball and crying on the bed in agony, they will be experiencing their own type of discomfort. The person they love is in pain and there is absolutely nothing they can do about it. Your children will not be able to play as roughly with you, you won’t be able to go on as many nights out with your friends and you won’t be able to work as late as you used to.

Our illness unfortunately doesn’t just affect us but those around us as well. However, there is a light in all of this – that even when our problems affect our loved ones, they still try to help, try to understand and try to not let it affect our relationships.

I have so many people to be thankful for. My mom and dad, who took me to hospital appointments, who held my hand when I wailed in pain, who sorted my medicine and took time off work to look after me. My aunts and uncles, who not only helped out with the hospital runs and babysat my siblings when I was stuck at an appointment all day, but who also supported my mom and dad emotionally as they worried about my health.

I am thankful for my sister who was just 13 when I was diagnosed, who helped me dress in the morning and take my socks off at night. Who cuddled me as I cried and who always reminds others to slow down and wait for me.

I am thankful for my partner, Aidan, who accepts me for who I am, illness and all. Who rubs my back when I’m fighting back the tears and who is patient with me when I struggle with basic daily tasks. Who helps me dress when my hands are too swollen to function and who makes me laugh to try and distract me from my pain.

I am thankful for my brother and father-in-law who show me their affection in the form of fires and hot cups of tea to keep my bones warm. Who carry my shopping bags in from the car or open jars for me when I am unable.

I am thankful for my sister-in-law who is always trying to find ways to help cure me or make me better with natural remedies. I am thankful for my little brother who named me as his role model because at just 12 he saw what I was going through.

I am thankful for my friends who do all they can to understand my illness and who are the biggest supporters of my blog. They carry my bags when I am too sore and show only understanding when I have to back out of plans. Who make me feel “normal” and don’t treat me like something that is easily broken.

I am thankful for my little nephews, niece and my littlest sister who make me laugh so much I almost forget about the pain. They get me blankets and give me cuddles when I don’t feel well and ask me questions in a bid to understand why my bones are different to others.

This illness takes so much from you and at times it can be hard to see any light at all. But the love people show you, the care they give you when you are unable to care yourself…people need to stop seeing that as a loss of dignity and instead see it as something beautiful to behold.

Not everyone will understand, and you may lose some people along the way. But those people were not needed in your life if they could only accept you as a healthy person. No one chooses to get sick, no one chooses to be in pain. Those who choose to cut you out and who don’t even attempt to understand your new life are not meant to be in that life. Why not say thanks to those who show you love and compassion. They might not be going through what you are going through, but that doesn’t mean they aren’t doing their best.

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To Children Learning to Be Brave With Rheumatoid Arthritis

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Hey, you. I see you, with your cheeky smile and wise eyes.

First things first, I want you know that everything is going to be OK. You will need to be brave a lot and learn to be strong, but you will be OK.

I expect lots of things are changing right now. Your health is up and down, you’re in the hospital lots and miss school. You probably have to take lots of medicines that make you feel sick and tired, and have nurses poking you with their sharp scratchy sticks. You think about your friends and all the fun you think they are having, and probably wish it would all just go away and things could be “normal” again. They will be. You are just going to have to find a new normal, my angel.

I was once your age. I was a child like you, the one who was always ill. I spent lots of time staying in the hospital without my mum as I got older, and it was pretty scary. I could see that it upset my mum lots to have to leave me there, so I tried my best to be brave. I made friends with the other sick children, and talked to the nurses when I was sad. They were always very lovely and kind to me.

I found that after a while I could smile, even when I had to stay in the hospital a lot. I went to school in the hospital, and that was annoying — you would think we could at least get out of school! It was good, though; it gave me a chance to talk to other children and think about something else other than being afraid and sick.

I spent a lot of time in the hospital when I was little, but reading and studying saved me. It made me feel “normal.” The nurses still nagged me to rest and poked me with their sticks, and I had to go in funny noisy machines a lot so they could look inside me, but I always had a book to escape into. I decided very quickly that just because I couldn’t walk and do the things I could do before, I could still do something. So I wrote stories, drew pictures and read endless books.

I was a kid way before computers; can you imagine that! So I made friends at my real school with people who understood that I couldn’t always join in; we made new adventures that I could do. My mum was very brave, and when I got old enough, she would let my friends go out with me on my crutches or in my wheelchair to the shops or park. Sometimes I joined in with their games or football or their dance routines, even though it hurt. I would get told off, but it was worth it.

I know that right now it feels impossible that you will ever be brave enough or grow up to be old like me, but you will. You will find a way to be strong enough if you let the people who love you help. Tell them your worries and ask if there’s a way you can still join in even though you are sick. I remember my mum sneaking me out of the hospital one night to go to a show. She did get the doctor’s permission, but it felt really naughty creeping out and going on my crutches to do something I’d looked forward to, then sneaking back into my bed where the other kids had waited up to hear all about it.

There will be days when you just want to curl up and shut the world out; that’s fine too. Remember, though, that tomorrow is a new day with new possibilities and new adventures to be found. Try very hard not to worry about what the other kids think. I will let you in on a secret: when they look at you in your chair or walking funny, they are often thinking how brave you are — even the ones that can be unkind. They are just frightened, as they know they aren’t as brave as you, brave enough to keep trying to go to school, brave enough to make new friends, brave enough to keep smiling. You are wonderfully, beautifully brave — remember that.

I am now a grown-up with four children myself! I studied hard and became a teacher, and even when I was too sick to do that anymore, I found something else to make me happy. Now I write stories to help people like you and me. I sing even though I can no longer dance, and I swim as I can no longer run. You’ve just gotta find that thing that makes you smile and say “but I can do this.”

You too will grow up one day and be one of the most amazing people, I promise. You just need to let the people that love you very much help you and take care of you until you get there. Even then, they will still be there when you need them. Here’s the thing that makes you special: You will understand how it feels to be scared, lost and hurt. Because of that, you will be the kindest, bravest, strongest, most incredible grown-up — and that’s a rare and beautiful thing to be.

Be brave my lovely one. Now let me see that beautiful smile.

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