I’m probably not the only one who has heard variations of the following: “I have terrible anxiety too. But it doesn’t cripple me the way it does you. You need to find a different coping method.” Or “Wow, I have Crohn’s and mine is worse but I still work. Maybe you need different medicine?” One of my faves that I’ve heard in the past: “I have triggers too, but I don’t let them control my life.” There’s more of course, but you get the idea. These comments are frustrating and hurtful in many different ways, but for me at least, it implies that I’m not doing enough and I think that everyone who bears the particular cross of chronic illness/pain and/or mental illness, not only does absolutely everything they can to help themselves but wishes it never happened to them in the first place.
Maybe I am just naive, but I always thought that when you share a specific issue with someone, like an illness, disability or mental health disorder that you kind of join together and lift each other up not criticize, antagonize or bring each other down. We all begin in this place where you feel so alone with your problems and struggles. You feel like no one is seeing you or truly hearing you and without a doubt, no one out there understands. Then, you begin to reach out slowly and carefully to a community that is inhabited by others just like you, living with the same illness and daily struggles you are going through and you feel like you can open up and share things. It feels like a sledgehammer coming down on you when the people you thought would understand, the people you thought you could trust, bring you down and make comments like, “you have to be exaggerating, I have the same thing- worse- and I still run around for my five kids,” or that “you have to be doing something wrong.” I’ve even watched as people on forums intended to bring people together, instead, tear it apart with savage comments about the choice of medicine a person takes (on the advice of their doctor). “You’re going to become addicted.” “How could your doctor write a prescription for that poison.” “You’re better off just hitting the streets for drugs at this point.” This is no joke. I’ve read this and worse; my jaw just about hitting the floor or feeling so disgusted I have left groups.
I write for both the benefit of those going through chronic illness/pain/mental health and to attempt to educate those who do not have to deal with these things and perhaps don’t understand what it is like. I should not have to speak to the community I call my own and tell them that they should not discredit others’ struggles simply because they have been graced with the ability to handle them better or they think they’ve been through worse. That kind of thinking hurts everyone because we are not carbon copies of one another. We’re all uniquely and beautifully human and while there are amazing people out there (you may be one) who can handle the weight of their illness or struggles better, who might even overcome them and eventually inspire others, this does not mean I (or anyone else) is somehow less than because they are still struggling and still fighting every day. Additionally, when it comes to the medicine we are prescribed by our physician overseeing our health, there are some who rely solely on the advice of their doctor and there are others who might investigate further what is best for them. But there are far better ways to handle a conversation about medicine than telling someone they’re going to become an addict. It can cause a person to stress, trigger anxieties you may not know about and possibly abandon medication altogether. How a person decides what goes into their body to help their pain or illness is personal. Unless you have a less alarmist approach, stay out of it.
Life is so difficult, even when we are unburdened by the weight of chronic illness/pain and mental health problems. We don’t need to add to those struggles by attacking one another. Instead, we need to support one another and fight to bring awareness to illness and pain that have been ignored for too long. We can do so much good together; we can improve life for so many including ourselves, it seems like the only answer is for people to be more supportive toward each other. We’re all doing the best we can as we navigate the treacherous waters of chronic illness.
And here you are living, despite it all. -Rupi Kaur
When you are struggling with mental illness and/or chronic illness and/or chronic pain, life can be overwhelming. Every day feels like a battle with mood or symptoms that keep you from feeling your best. You struggle with guilt over not being able to do the things you once did, or not being able to do them as often, or sometimes, criticism from friends/loved ones who don’t understand this seemingly new person that you’ve become, when in actuality, the imposter was that person they saw before it became too exhausting to put on a façade of wellness. Too, there’s confusion about how some days you might actually be feeling well enough to be a glimpse of that person you were, smile, be happy and people wonder, then, why you can’t be that person all the time. And if that weren’t enough, there are those who will criticize you or question the legitimacy of your illness because you have days where you are happy.
But this post is not about all that. It is about this:
“And here you are living, despite it all.”
If you can, take a moment and consider everything you have gone through in your life. Think about the stress and anxiety you have felt before knowing a diagnosis or the continued stress you are feeling because you have yet gone un-diagnosed; think about all the anxiety and pain your mental illness has caused you; think about all the symptoms you’ve had to deal with because of your chronic illness and think about the physical pain you’ve experienced because of your chronic pain.
You are still here, despite it all. You are alive and important to those around you, and you have gifts of your experience and perseverance that you can pass on to others. You didn’t give up, and even if you did for a while, you were able to push through and continue. These experiences can sometimes be gutting but every day you fight back you are giving yourself the opportunity to live and touch other lives by connecting with them through similar experiences. It doesn’t mean you have to start a blog or try to become an influencer on Twitter or TikTok, but just opening yourself up to the idea of sharing your experience with someone who you think might benefit from hearing it. Sometimes, it can be the simplest act that can save someone from the edge of despair, and because we have been there, we might see the signs before someone else notices.
It’s not always easy to sit down and reflect on everything that has happened to you or is still happening to you and feel good about still being here. There are times where it’s such a struggle and such a painful existence that you wish it were over and yet you fight because there’s that shred of hope that tomorrow or a month from now won’t be as bad. You look for things that bring you joy and peace and you hang on to that for dear life. And sometimes, you are lucky enough to have a few hours, or a day or a week where you feel normal and unburdened by your health. You are able to enjoy things and you are cognizant of that and you savor each and every moment. These are the things we have to pass on to people who find themselves in similar shoes. The hope that is possible. The hope that can be. The hope that despite it all, you will survive and the hope that despite it all you will thrive.
Self-Care Kit: Keep a box full of your favourite things that make you feel good. It could be photos, books, your favourite recipe, essential oils, candles, even chocolate! Whatever you want. This is about cosy comfort.
Media/Digital Detox: Spend an entire day unplugged from your phone, computer, laptop and T.V. Think of something or somewhere you’d like to do or be and go do it.
Listen to New Music: Fall down the YouTube rabbit hole of music, clicking on new music that you’ve never heard before. You might just find your new favourite.
No More Monkeys Jumping on the Bed!: What? Who said no more? I know, crazy, but it kind of takes you back to being a kid and the pure silliness and joy, so go on, jump on your bed! Can’t jump on the bed, don’t worry, you can colour, play with a balloon, pull out Candy Land and play with your kids or have a tea party! Just do something that reminds you of being a kid again.
Go Outside in Nature: Take your music outside, sit in a comfy chair, or lay on a blanket out in the park w/some water or tea and a book or walk barefoot on the grass and feel grounded. We are a part of the earth and from time to time we need to connect with her again.
“I’m okay.” “I feel fine.” “I can power through this headache.” “I’ll just pretend my tummy doesn’t hurt.” “I’m not depressed.” “I’m not manic.” “I’m over exaggerating how much I hurt.” And so on…
These are just a few of the “little” lies we tell ourselves daily to get through the day and not feel like we’ve failed somehow, or that we tell ourselves to power through our day and not have to lay down and rest.
“I’m normal. I can do anything anyone else can.”
I tell this to myself repeatedly, like a mantra. I envision myself the way I was in my 20’s when I felt bad but the feeling had no name and I had little children and a house and there was no time to worry about I felt; when I was too preoccupied with making sure everyone else was cared for and that they had lunches for school and did their homework. I will sometimes wonder if I was that busy again, would I have time to dwell on all my ailments or would I just push through and not worry? I will contemplate life without knowing about my chronic illness- what if they didn’t have a name? Would I just shrug it off and pluck away at life quietly? Or would it continue to be so debilitating?
“You aren’t as bad off as some…”
Even though I advocate others to never say this to someone with chronic illness, in the back of my head I will hear it. I will see others who are chronically ill, and how they can do so much more than I can and I become frustrated. It makes me feel like I have to be comparable to them, which is something I tell people with chronic illness NOT to do because it just isn’t healthy. Don’t compete with those others you follow on Instagram or Twitter or that you know personally. Even those of us with the same illnesses will experience it differently because we are unique. It doesn’t do us any good to try to keep up with someone else and can make our life worse. Just do you.
“Feeling pretty good- must do everything I need to get done today because tomorrow I may feel like hell.”
Why, oh why, oh why, do I tell myself this? I could just facepalm every time I do it because I know I’m going to feel worse. But, Jesus H. Roosevelt Christ! – (who gets that reference?) it never fails that I will go crazy cleaning and then regret it afterwards. It sucks. The ramifications of overdoing it should be enough to deter anyone from overdoing it ever again, and yet, NOPE, I still do it. Am I alone? This is something else I’ve preached in my blogs because I know in my head how nonconstructive it is to do this- how much better it is for your body to do a little bit at a time, and yet when I feel good, there is this intoxicating lure to clean and make sure everything is sparkly, until I just flop.
Or as my husband will tell me, “Fucked up, Insecure, Neurotic and Emotional?” To which I will just give him the side-eye and huff. He knows I’m not “fine” and I know I’m not “fine” but I continue with the pretence because surely if I say it enough I will “will to be true.” I’ve done this repeatedly, with regards not only to my physical health but my mental health too. “I’m fine. I’m not depressed.” Or “I’m fine, I’m not manic.” But that “little” lie can do BIG damage, especially with regards to our mental health and trying to deceive yourself that you are okay and don’t need to ask for help or tweak your meds. In the long run, it’s just safer, to be honest about how you are feeling. Talk to your doc about feeling worse because of new symptoms, while it may make us feel “low-key hypochondriac”, new symptoms or feeling worse could be a real sign something else is wrong.
It’s not easy being chronically ill. We want to be like everyone else, normal, even though that is an illusion. Normal truly doesn’t exist and everyone out there has their own, personal struggle. We tell ourselves the lies because we want to get through our day; because we need to get through work, we want to have enough energy to advocate; we want to give other people (friends and family) hope and reduce their worry about how we are feeling and we want to have fun. The list of reasons we may lie to ourselves and others goes on. Everyone has a different motivation for what they do, but I feel much of it stems from guilt. Guilt about not being who we once were, for letting people down when we can’t go somewhere, or when we can’t clean or cook the way we once did. There’s a lot of guilt because we remember ourselves before chronic illness- even if it’s just a glimmer- and we wish we could be that person. And if some has spent the entirety of their lives with chronic illness and can’t remember a day when they weren’t sick, they watch people who live their lives in healthy bodies and want to be them. They will even pretend they are not sick so they can do the things their friends are doing and not be left out. It’s difficult being a prisoner in your own body because we have our minds that are vital and healthy and allow us to imagine life without sickness- and that imagining can almost be cruel.
I’m not telling you not to tell those “little lies” to yourself. We’re going to do it, but try to recognise it when you do- acknowledge it and move on. Try to carve out time when you can be honest to yourself about how you are feeling and what is going on in your health that should be brought to your doctor’s attention and then, go back to life. Your health is the most important thing and if you continue a habit of taking advantage of yourself and asking your body to do more than it’s capable of, you may end up in worse shape than you originally started. No matter what you may think, you are important.
We take a lot of things for granted in our life. Some examples of things we’ve taken for granted recently- going out to the store whenever we want, going to school, work, out to eat or (without a mask). Movies and concerts were cancelled and other public events that have been tradition were also cancelled. We’ve taken these things for granted never thinking how easily they could be stripped away or reduced. However, for those of us in the chronic illness and chronic pain community, life didn’t change very much during this crazy time except for the necessity of wearing a mask. At least for myself, I only felt a little bump of change to my life, whereas healthy people felt a definite jolt of change.
Why do we take certain things for granted in the first place? Sometimes, it’s just because a certain thing has always been there. Many people take for granted their parents, because they are always there- until they are not- and then we realize what we have lost. We take for granted our freedoms and liberties because they are always there, until suddenly we are forced to walk around with masks, and are restricted in our movements even if it is for the safety of those around us. We’ve heard the chorus of many who feel their personal freedoms have been violated. But, what about your health? Is your health something that you take for granted? Is it something you feel will always be there? Or maybe you don’t feel like there is a threat until you are much older, say your 60’s or 70’s?
If you are lucky to be healthy, take it from someone who isn’t, to not take your health for granted. I can’t say that I was ever “healthy.” I came into this world with sickness and I grew up with asthma, chronic sinus infections, allergies, chronic migraines and chronic bronchitis. It felt like every time the leaves began to change, I was already sniffling and sneezing, which would, in turn, affect my asthma and then would invariably turn into a sinus infection that would eventually manifest itself into bronchitis. Later on, I would develop structural issues; ankylosing spondylitis, rheumatoid arthritis, psoriatic arthritis, gluten intolerance, Crohn’s and a bevvy of mental health issues from anxiety to bipolar. Most days I accept that this is my life. Most days I power through doctor visits, blood work, infusions, tests, pain and symptoms that keep me from ever feeling truly great. But there are those days that I lament my body and its various weaknesses and I wish with all my heart, that I was healthy.
I’m very active in social media because of blogging and I see the active lives of many people I once knew or currently know, who are my age or maybe a little older or younger and I wish I could be doing some of the things they are doing. I wish I was able to go hiking; I wish I could go running like I used to; I wish I could plan a vacation without worrying that my health will get in the way of me and my husband having a good time; I wish long car rides didn’t hurt me so we didn’t have to stop so much on my account; I wish I was able to be more active and I wish there weren’t so many days that I dreaded getting up. It’s painful to know that so many things you once enjoyed have been stripped from your life. It’s difficult to reconcile how things were to how things are.
If you are healthy, don’t stop taking care of yourself. Don’t become negligent of your health because you think you have time. I may not have been in stellar health to begin with, but I certainly never thought things would evolve to where they are now and it was always something I envisioned would happen when I was old, like my grandmother. If you have your health, fight to keep it for as long as you can. It’s true that you can do everything right and still find yourself with some illness, but I figure it can’t hurt that you’ve done your best to take care of yourself. Life is too short as it is. Live your best life and keep yourself as healthy as you can so you can enjoy it until you are a ripe, old age.
Oy. If I had a dollar for every time, I blamed myself for my illnesses and for passing some of them along to my children I’d be rich. No lie. I think we all do it at some point and some of do it more than others but it’s definitely not healthy. I’m a strong believer in your mind and body believing what you think and if you are actively blaming yourself, I think that your mind will eventually believe it and that is not good. You are not responsible for an illness that was never your fault to begin with.
Compassion: Yes, you heard me correctly. You need to have a little compassion for yourself. It might be easy to feel compassion for others but, somewhere along the line you stopped feeling it for yourself. Take a deep breath inward and remember you are human too. Remember that your illness isn’t something you asked for and that you deserve compassion from the person that matters most, yourself.
Mindfulness: There’s recently been an influx of talk about mindfulness. In the media, commercials, everyone is talking about it and they should be. I believe we become better people when adopt a mindful attitude, especially with ourselves. How do we adopt mindfulness? I think slowing down is important. Our days can be cluttered with appointments, kids, significant other and work that we forget about ourselves. Being grateful and giving back to others is important too. Sometimes we get so wrapped up in how bad our illness is that we forget about what we have in our life that makes it worth living. We forget about the things that make us happy and it’s important to stop, take a breath and remember those things that give us purpose. Contributing back to the community can help us be mindful of what we have. Volunteering is a great way to help your mindfulness activity and you can volunteer just about anywhere doing anything, even from home.
Meditation: This works hand in hand with mindfulness. Quieting your mind, which can be a very busy place, and where you can adopt a whole slew of self-loathing and contempt for your illness, can be quieted and pushed away by practicing meditation. It can be small at first. No one goes into meditation for long periods of time without some serious training! My favourite methods of meditation that I have taught my children is the candle technique, where you look at a candle and watch the flicker of the fame and just try to focus on it. I don’t believe in clearing the mind because we are always going to have something in here. It’s human nature to think and we don’t have an on-off switch. I think if you find yourself thinking about the same things over and over again pick one and try to figure out in your head why it’s so important. Music meditation is something I do. Listening to music is a favourite hobby of mine and there’s a running joke here that every song is my favourite song because I say it so often. Listen to your favourite music and try and relax. I wouldn’t listen to Ozzy Osbourne or Marilyn Manson here. Great music but a little too much for this activity. Listen to the music and meditate on your day or your illness if that is what is predominantly on your mind. Try to figure out why these thoughts are bothering you. I also incorporate a mantra. Write down a positive mantra, and you can find them online or make up one on your own that helps you feel positive about yourself and helps you to feel strong. Repeat this mantra when you are meditating. When you say things enough times, you begin to believe them. Believe that you are not at fault for your illness. No one asked to be sick.
Some people recommend exercise. I don’t have it in my list because not everyone can, but- if you can do some activity that helps you relax, where you can tell yourself that mantra you have chosen, go for it. Yoga is something that is beneficial and that you can do low impact and even from bed. Seriously. I have found some yoga exercises and sequences that you can do right from your bed. If you just can’t, find something else. Colouring or doing some kind of artistic craft can be very beneficial for your mind and soul and I believe you can make just about any calming activity into a meditation period by just being at peace, saying that mantra and relaxing yourself in your art as much as you can. If you get diverted by other thoughts try to figure out why those interrupted the moment. Then, get back on track.
My final word: Don’t blame yourself for something that was never your fault to begin with. Illness is never something anyone should be saddled with guilt over. Especially long-term illness. It just is. You can think of it as fate if you want, the cards you were dealt, but it is not your fault. Don’t blame yourself.
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In recent days there’s been quite a lot of buzz in the media and social media surrounding the President and his coronavirus briefing. There’s been those coming to the defense of the President, saying he never specifically said “inject” and then the President, himself walking back his comments implying that it was sarcasm, meant to infuriate the media and so he could observe what they would do. Before I continue, here’s a portion of what was said.
“Supposing we hit the body with a tremendous — whether it’s ultraviolet or just very powerful light,” Mr. Trump said. “And I think you said that hasn’t been checked, but we’re going to test it?” he added, turning to Mr. Bryan, who had returned to his seat. “And then I said, supposing you brought the light inside the body, either through the skin or some other way.”
“And then I see the disinfectant where it knocks it out in a minute — one minute — and is there a way we can do something like that by injection inside, or almost a cleaning?” he asked. “Because you see it gets in the lungs and it does a tremendous number on the lungs, so it would be interesting to check that.” Trump Muses About Light As Remedy
I’ve read opinions in posts circulating social media, suggesting that they are in health care and that what the President misspoke as “disinfectant” (he never said Lysol specifically…) could have meant a procedure known as lung lavage, where antibiotics and other medications can be injected into the lungs so they can be “washed,” giving the patient the ability to breathe better. It’s commonly called lung washing; “this procedure treats the rare lung disease pulmonary alveolar proteinosis (PAP).” How Lung Washing Helps Patients Breathe Again The article does say, which you can read for yourself by clicking the link, that it doesn’t work on any other lung conditions (diseases). However, they do use this technique for Pneumonia and they also use something called Bronchoalveolar lavage (BAL) (also known as bronchoalveolar washing) for Interstitial Lung Disease and COVID-19, as a diagnostic tool and therapeutically to remove mucus, improve airway ventilation, and reduce airway inflammation in conditions such as chronic obstructive pulmonary disease (COPD). Bronchoalveolar Lavage I’m not a pulmonary therapist; I researched this information to make sense out of what I had been hearing.
The first thing I learned, about the importance of your platform and how to use it, is this That the President clearly doesn’t understand the magnitude his words have on his platform and that the extent of those words goes way beyond the obvious political, “I’m King of the World,” mentality.
It’s interesting to me the debates people are having across social media and how some revolve around the semantics of how the President used the word “injection.” Some argue that he did not mean to inject something into the lungs, with, what I am presuming is a large needle. Others have zeroed in on the use of the word disinfectant, and how the President seems to conclude a relationship between the disinfectant used in a lung lavage and Lysol or Clorox (bleach) that you would disinfect your countertops with. Disinfectant Makers Steer Consumers Away from Trump’s Coronavirus Comments Still others, use a red marker to indicate that the President never used specific product names, like Lysol or Clorox and it was narcissistic on the part of these manufacturers to think the President was referring to them. But then you have the President himself, who attempts clarification of his remarks by saying,
There were very few people arguing about the 1.) The intent of his words, 2.) The impact of his words on his, 3.) or the consequences of his words on his listeners. Every person who has a social media account and accrues followers, who have some kind of purpose for being there, be it a cause they are passionate about, a message they want to send, or maybe they’re an entertainer, model or visual artist (the list is infinite); those people have now acquired a power- an audience. We take that power for granted. It’s just social media, but it’s much more than most care to admit.
The second thing I learned, about the importance of your platform and how to use it, is Intent, Impact & Consequence. As a writer, it’s important to step into your words with Intent. It’s not as esoteric as it sounds. There’s no chanting involved or mystical music. The only purpose; setting intent.
If you practice yoga or mindfulness, you know a little about intent. An intention is not a goal. It’s something you want to align with your life; it’s an expectation or attitude you’d be proud to commit to. It has to come from your heart and soul. Setting intent in your writing is not much different. It’s a commitment to setting a purpose in regards to your words. Understanding that when you send your writing out into that perceived void, that it’s not that at all. It’s a space filled with living, breathing, humans who have hearts and souls like the rest of us. Intention Setting
Social media has changed our relationship with words. It’s changed how we communicate with people and how people hear our voice. In some, this change has been empowering. They have been able, through the use of their platform, bring awareness to those causes that are meaningful to them. Whether it’s money through fundraising or raising awareness of a rare disease, these voices use their platform and their voice (words) for the positive. Conversely, some people use their platform and their voice in a way that is negative.
I believe, as a writer, that my words are powerful. My words, like an artist, paints broad and delicate strokes across the canvas bringing to life a picture for my readers to see. Sometimes, this is a very literal picture. Other times, it isn’t so much a picture but emotion, that I am drenching the reader in. Sadness, loneliness, anger, happiness, anticipation, joy; all of these feelings could wash over a person in one blog post. Each word was carefully chosen to convey a feeling or meaning in my heart. Not everyone is as thoughtful and social media has become a grey space where people do not honor the living, breathing, the human being behind the screen. As we are thrust into Twitter or FaceBook (only to name a few), people feel it’s perfectly okay to express their opinion or thoughts, without any “thought” as to how it may impact anyone beyond the initial self-gratitude of getting that idea out, or those little likes people click, which can become addictive. They deny any responsibility for how their words may impact another person reading them when the first and cardinal rule of any writer (someone who writes any words to be seen by another) should be ownership of your words. If you don’t own your words then they aren’t yours to begin. You have to be prepared to go down with the sinking ship, which is why a writer should take care with words. They should be thoughtful as to the intent of their words and how it will be interpreted. A meme I’ve seen reading something like: It’s not my problem how you interpreted my words. It doesn’t work with a writer; everything you want to be heard- your only tools are your words. There’s no tone of voice, no inflexion, no facial features or hand gestures. However, it types out is how someone out there will read it and it will have an impact on that person. End of story.
The third thing I learned, about the importance of your platform and how to use it is how your words can Impact people you don’t know. Everything we type can have a major impact on another living, breathing human. The problem is most of the time we can’t see how our words impact people. They are sent into the ether of the internet, sometimes lost in the shuffle of all the other posts, but somewhere out there, someone is reading it and you don’t know the situation of that person.
The fourth thing I learned, about the importance of your platform and how to use it, is, how your words have Consequences that you must own. Most people think of consequences as negative. But everything we do, every action, has a consequence. It’s not necessarily bad, but we have to be willing to embrace the negative as much the positive.
“Sir Isaac Newton taught us that for every action in the physical world, there is an equal and opposite reaction. This principle not only applies to the physical world but in other areas of life as well.” Actions Have Consequences Every action we take produces a reaction and consequence. You yell at your friend and they start to cry. Their crying is a consequence of your yelling. You’re angry that your boyfriend cheated on you and you take to social media, not only attacking your ex’s actions but him personally and the girl he cheated on you with. What you don’t know is that the girl battles depression and that he never told her had a girlfriend. Your words have an impact on her. She plummets into depression and attempts suicide, for reasons you may not understand. It’s easy not to bear a responsibility such as this. The responsibility that your actions may have driven another person to an action that could have cost them their life, but it is your responsibility to bear. Life brings both good and bad consequences depending on our choices and it doesn’t matter if we say it on a platform and the person that is affected is 3,000 miles away and we didn’t know them. It is my opinion, my belief, that this inherent lack of understanding within humanity, is at the core of many of our problems. We have stopped viewing one another as humans who directly affect one another because of the great chasm of space the internet has created between us. Once we can take responsibility for the impact of our words, and the consequences our actions may have on other people, we may become better as a human race. We can begin this, in part, by committing to operate using these platforms with an intent that is aimed toward positivity and goodwill.