I Always Feel Guilty: Yes, always. I feel guilty because I don’t visit with people I care about. I feel guilty because I rely on so many people for so many different things. I feel guilty when I don’t cook a decent dinner. I feel guilty because my house isn’t clean enough. I feel guilty because I can’t walk my dogs as much as I would like to. I feel guilty because I can’t do as much yoga as I would like and sometimes, I need 3-4 days to recover from one 30-minute class and that class isn’t hard-core yoga. I feel guilty because my specialised diet forces my husband and family to go without things they enjoy. After all, it would wreck me to cook two meals. I feel guilty because I can’t work. I feel guilty because I can never say to someone that I feel 100% wonderful. I feel guilty because my mental health sucks. I feel guilty and sad because I have passed so many of these genes to my children and they suffer because of it. I feel guilty because I often lie about how I feel, so I won’t worry people. I feel guilty. This only covers a small portion of my feelings, but it can become overwhelming.
I Am Frightened of My Future: My husband is getting close to retirement age. We are steady planning out the future; where we want to live, what kind of house we will purchase and how we’d like to decorate (OK, how I would like to decorate.) We’re both so excited about it and doing things we like to do together, without the children. But when he brings things up, I realise I am terrified. What if I can’t do all the things we’ve been dreaming of? What if I am not there? These are things that could happen to anyone; these are things that have happened to people and I know I can’t predict the future, but I still find the thoughts of my future terrifying. I am a chronic pain patient and with “opioid hysteria” and yes, I will concede there is a problem with certain drugs and those who have abused them because they were misguided by a doctor, there are still those of us who very much need them. But we’re being punished and many have died because they have been left defenseless against their pain and quickly over-run by it. Our resources for pain management because more scarce and I find it as much a tragedy when someone is left to suffer in pain as when someone becomes addicted to the drugs that were supposed to help them.
I Feel Like I am Alone: Logically, I know this isn’t the case. I have friends and loved ones who care about me. I have a truly amazing husband, who I adore and I know adores me. But no one truly gets it. And, while I have many on social media who do understand because they are in the same situation, sometimes you wish you could hang out with someone in that very same place, so you can feel at ease. It’s difficult for me to make plans with people (family or not) because I can’t predict how I am going to feel in the future. It’s always a day-to-day thing and you end up feeling bad when you can’t go somewhere you promised you’d go, or have to cancel plans. Funny thing is, you end up not having to worry too much about it because most people just get tired of it and stop calling and hanging out.
I Feel Like People Don’t Believe I am Sick, Because I Don’t Look Sick: I wish, sometimes, that I looked as sick as I feel- sometimes. The only thing I have going for me is that I don’t look sick or my age. The downside is that no one can see the crumbling immune system that is mine, and no one can see the pain I am in daily, which gives people the false idea that I am just fine. When I remind people that I hurt, or can’t do it because I don’t feel well, I feel like there is a tiny part of them that doesn’t believe me or thinks I am doing it just so I can get out of something. This generally leads me to go on a sporadic flurry of doing chores until I fall over dead because I want to feel useful, despite knowing that my body just can’t keep up sometimes. It’s a vicious cycle that while I have even preached on my blog about moderation and doing what you can, I’m terrible and almost incapable of following myself.
Not All Doctors Understand (but I am grateful for the ones who do): We’ve all been there with doctors ignoring our pleas for help and giving us a litany of excuses as to why we feel the way we do, which can range from “it’s all in our head” to “you need to exercise more.” It can leave us feeling like we are crazy. We know our body and no one should make us doubt our gut. It makes me so angry that I wasted so much time with so many doctors because I chose to believe them blindly. After all, they wore the white coat and had all that schooling. Surely, they have to know, right? Having been writing now for a few years and learning how little “schooling” doctors receive on autoimmune illness, rare illnesses and chronic pain issues, it makes a lot of sense as to why they don’t always pick up on the signs. However, you have to do your due diligence and fight for yourself until you find a doctor who is willing to listen and take the time to figure out what is going on with you. That may mean a rheumatologist, it may mean a neurologist, it may mean a gastroenterologist for you. When you find that doctor, don’t let them go and be grateful that they chose to listen.
I Feel Like a Failure: Sometimes, I do. I knew this isn’t an exclusive feeling to those with chronic illness/pain, but the reason I feel like a failure is directly related to those things. I feel like a failure because I haven’t finished school. I feel like a failure because I can’t do many of the things that those in my age group are doing or have done because of my chronic illness. I watch their feeds on Facebook or Imagine Chat and I see these amazing vacations or doing marathons, going hiking, excelling at their job, and it hurts a little. I try to look at those things I have been able to accomplish and feel proud of myself. I remind myself that we are all on a different journey. But it’s still difficult.
I Almost Always Feel Judged Because I Take Opioids: Ugh. This is huge for me. I’ve written about it before here: https://lovekarmafood.com/2019/06/25/i-am-an-un-apologetic-opioid-patient/ However, it’s difficult being a chronic patient who takes opioids in this age of “opioid addiction and hysteria.” I don’t like to feel judged and look on with disdain because I take opioids, and I don’t like to feel like I am contributing to an epidemic that was never my fault. Everyone is different and, unfortunately, there are people whose body chemistry make them more vulnerable to addiction. I am grateful that I am not predisposed to that vulnerability and in the 4 years that I have been using opioids to help me manage my pain I’ve never had a problem. I know I am lucky. What I don’t think, is that I should be judged as though addiction is lurking behind some future door; without opioids, I would not be here.
I Am Almost Always in Pain: This is not an over-exaggeration of my situation or the situation of many of us with chronic illness/pain. Pain is ever-present. Even with the medication, I am given I am still in pain. There is a reason they call it “pain management.” Every day finds me with some amount of pain and with the meds, I am given it is managed, somewhat. There are days where there is a perfect storm of symptoms and my pain crosses that threshold of managed to unmanageable, but gratefully, those days are fewer because of the pain meds I am given. There is an idea that because I am in pain every day that I should be used to it, but that is wholly untrue. People don’t get used to being poor or hungry or abused. Each day remains a struggle.
My husband and I were finally able to get our Covid vaccines. I had been apprehensive about it because I already had Covid, and was worried about the side effects. Also, because I have Crohn’s, Rheumatoid Arthritis, and Fibromyalgia, I worried my immune system would overreact to the injection.
Day 3 Post Injection? I feel like hell. It started with the Covid headache (which was very familiar to me) and blossomed into a migraine. The aches and soreness all over my body evolved to a full-on flare. My worst fears about the vaccine come to fruition.
So, this post is two-fold. 1.) No matter the side effects from the vaccine, if you are able to get it, please, please, please, get the vaccine. I know some people can’t for health reasons, but that is why it is so important for everyone else to get vaccinated. 2.) If you are currently in the midst of a flare, I know that you are suffering and I hear you. But you need to remember that you are stronger than you feel right now.
I know, it’s easy enough to tell someone they are stronger than how they might be feeling at that moment, and even if they understand what you might be going through, they are not you. But you have the strength and even if you don’t know why, you are here for a reason. I truly believe that we all serve a purpose in this universe and even though it might not be revealed to you in this life why you are here and what purpose you served, you will understand in the next. There are so many people in this world, and all of our energy touches one another, and sometimes we can touch people in a way that saves them and we may never know.
Chronic illness and pain can sap us of our strength, leaving us feeling like we don’t have anything else. It robs us of our joy and narrows our world down to grim shades of loneliness. I’ve been there and I’ve been sucked into that hollow vortex of lies that the miserable symptoms of a flare can inspire. Don’t give in. You have so much to offer this world and so much to give to other people. I know that not everyone can share in blogs, but keeping a personal diary or personal blog that is set on private can be very helpful and therapeutic. You can sometimes see when you are veering off into a place that isn’t good for your mental health when you are writing and most of all you can see the evolution of your progress when you are writing for along period of time. It’s incredibly helpful and positive to see where you started and in 6 months, see how much you have improved.
If you are in the midst of a flare, remember to take care of yourself. There’s no lazy, or hopeless, or somehow being unworthy, when it comes to taking care of yourself, taking the time to rest when you need to, not cleaning or cooking and enlisting help; don’t feel guilty for putting off that shower or taking a nap after showering, don’t listen to people who may criticize what you are doing, because if they aren’t in your shoes than they have no business telling you how you should be living your life. Don’t be sorry for doing things to take care of you. End of story. We only have one life, and in the brief time we are here we need to do things that help make us feel better. Be good to yourself.
There are some out there in the land of healthy who believe that because we’ve been in chronic pain and chronically ill (or perhaps one or the other), for X- amount of time, that we should be used to the constant torment. I’m here to tell you that this is a false-hood. We don’t become used to our situation simply because we have been in the same situation for years- we adapt. Adapting here means that we do things to make our lives easier; we adjust how we sleep in order to attempt a restful night, we shorten our work-days in order to ease the stress of long days on bodies that are already stressed from illness or pain; we change our diets to attempt to quiet the wrath of symptoms for digestive disorders; we take supplements in attempt to strengthen our weakened immune systems; we do so many things in a futile attempt to lessen the wrath of pain and illness, but we never, ever get used to it.
In some ways I can understand the logic behind that particular thinking. When we do things over and over again, for example exercise, we become accustom to how it feels. Eventually, we aren’t as sore as we were the first time, we hit the gym or when we attempted yoga for the first time. Our muscles become accustomed to the rigors of lifting weights or doing planks or squats. But chronic illness and chronic pain are just not the same. It doesn’t matter how many times I get a migraine, it’s always like the first time. It doesn’t matter how often my Crohn’s flares up; it always feels like an assault on my intestines. I am in chronic pain all the time from the fibro and back issues I have, not to mention the pain from the rheumatoid arthritis and while some days might be a little easier, it’s never something I get used to. It’s frustrating and painful and it simply takes so much out of you to just try and function every day. I am always finding myself lamenting the body I used to have (and no, I don’t mean figure-wise), and wishing that I could do the things and be the person I was.
I want people who don’t suffer from chronic illness and chronic pain to know that we never become used to this state of being. That every day is a challenge to simply function on a semi-normal basis. That you don’t have pain and symptoms from your chronic illness for 15 years and just become used to it over time. Our bodies are not static and every day presents new challenges and sometimes, new symptoms and frustrations. Pain medicine is something that doesn’t always work or only takes the edge off the pain leaving you at a seven rather than at a nine. It’s having side effects from the medication that is supposed to be helping you, or having to determine if it’s worth trying certain medications because of the side effects associated with that drug. It’s missing out on going out with friends (if we have any at all, because most people become tired with waiting around for us to feel better), it’s missing on going to events because we suddenly flare up, it’s the anxiety that we have because of our illness and pain (which exacerbates anxiety that we may have already), and it’s the surgeries that we may have in order to try and help our situation that sometimes ends up making us worse. No, we do not ever get used to it.
In finality, I offer this: if you are a family member or friend to someone suffering from chronic illness or chronic pain, try to understand them better; try to understand what it is they are going through better; be a better friend or sister, brother, mom or dad. Our lives are complicated and messy and we didn’t ask for this.
Thank you for reading, sharing and following my blog. It really means the world to me.
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.
There’s been a lot of discussions recently on “Cancel Culture,” and for the most part, I’ve kept my opinions to myself. In some instances, I understand why. Dumbo’s murder of singing crows, for instance, is clearly racist and I understand why a company geared toward children would take it down. I think most headlines were inflammatory on the subject because if you read the article, they are only removing it from children’s profiles. You can still access it in the adult Disney programming and if you want you can watch it with your children, along with The Aristocats and Peter Pan, and make it not just a recreational moment but a teachable one and explain to them why the depictions are not okay.
Today we learned that Pepé Le Pew would be eliminated from the upcoming movie Space Jam 2, but Speedy Gonzales would not. In some aspects, I can see why Monsieur le Pew would be axed from the movie with is misogynistic ways, and merciless hounding of Penelope Pussycat. As a victim of sexual assault, and as a woman who has experienced this type of behaviour first-hand from aggressive men, I can see how his character would be seen as “normalizing rape culture.” However, according to Fatherly[i], “Le Pew’s scene, which was reportedly going to speak on the importance of consent in all romantic encounters, was cut from the movie long before,” these previous cancellations or before an article written on Monsieur le Pew’s bad behaviour was written in the New York Times. This still hasn’t stopped everyone from getting their knickers in a twist about this or voicing their opinion on the subject (like me).
The fact that Monsieur le Pew was axed and Señor Gonzales was not, does bring up some issues for me. I don’t think there is any difference between how Speedy Gonzales is portrayed, in comparison to, let’s say, the Siamese cat in the movie The Aristocats. Both are caricatured versions of ethnicity, which if you look at Speedy’s cousin, Slowpoke Rodriguez (aka Tranquilino/Lento), there is a perpetuation of the idea that all Mexicans are slow and drunk and character uses a gun to help him be more effective where Speedy has his quickness. It seems there is abundant enough reason to eliminate him (not that I’m supporting this, only arguing this), as much as there is reason to eliminate Pepé. However- and I think this is important- why are we not making this a teachable moment for children? Why has it become so much easier to vanquish literature, or characters from this existence or hide it up on a shelf somewhere, where children can’t access it until they are adults? It feels like our children would get so much more out of this if adults/parents/grandparents/teachers, could take a time-out and explain why this may have been portrayed in the way it is, and why it is wrong and why we shouldn’t do that in the future?
I say this with a parents’ experience raising four girls to adulthood. We watched all the movies in question and my husband and I took the time to explain to them why each scenario was harmful and hurtful. I feel that if we raised our children with that “it takes a village,” kind of mentality, that there would be no need for “cancelling” anything. It seems like they are taking the choice from parents in some aspects, but with rampant disrespect of people and culture and women, there is a part of me that understands why. If we can’t unite and agree as a collective that racism is unacceptable, or that misogyny won’t be tolerated, and that no-means-no, then the problem becomes more about who we are, then about what we are cancelling.
We all know someone with a chronic illness (or multiple). If you know me, you know someone with multiple chronic illnesses. What you may not know is that sometimes, in casual conversations, you may unwittingly say things that invalidate our illness and as collateral damage, our feelings along with it.
I believe it’s the responsibility of the collective whole to be responsible/accountable for their words. Saying “I didn’t know,” is no longer enough and if we shared this information with you, it is, even more, your responsibility to be aware of your words. There will be those out there who will argue with me and say it’s just words. Or they will say that perhaps we should have thicker skin and not take things so seriously. But words have an impact and everyone is fighting a war that others can’t see.
It could be worse, right? Why yes, it could. But this is my life right now and I’m struggling with it. Sure, Sam over there might have it tons worse, but I’m not living his life and he isn’t living mine. What you can say instead: I’m listening to how you feel and how difficult things are for you. Is there a way I can help?
C’mon, smile. If I had a penny…This, to me, reduces all my problems with my ability to smile. I get that smiling may help with my mood, but it’s temporary. My smiling also helps you to feel better and ignore my problems that may be glaring before you. If I smile things can’t be so bad. What you can say instead: I know it’s difficult to smile right now. And you don’t have to. Maybe we can take your mind off things- how can I help?
But you don’t look sick. Every time I hear this, I mentally strangle the person. It just irks my brain that for my illness to be real, I need to look sick. There are many, many illnesses for which there is no obvious “tell.” This isn’t like the flu where you are going to have symptoms like coughing and sneezing. Even with cancer, until you actually begin going through therapy you don’t have visible symptoms. I could stand 20 people in a row with about 80% of them having a chronic illness and they wouldn’t look any different than the 20% who are perfectly healthy. Appearances aren’t everything. Keep in mind many of us have mastered the plastered smile, have perfected the ability to appear healthy because our jobs depend on it. People with chronic illness are some of the toughest I have ever met. What you can say instead: Wow, you look great today even though I know you aren’t feeling well. It always boosts our morale when someone notices the length, we go to feel normal.
Have you tried __________? This one is tricky. There are some legitimately excellent ideas people have given me that help with certain symptoms. On the other hand, there are some ideas that people have offered that are completely off the wall. We’re talking about strange, miracle cures to these health diets where you only eat avocados for 2 weeks. There’s also been spiritual advice which has ranged from, give your troubles over to Jesus, to needing someone to cleanse my soul with sage. I understand people wanting to offer advice; things that worked for them, but 1.) What worked for you may not work for me. Individuality is important to remember. 2.) You are assuming I haven’t already tried it (everything). When you are chronically ill/ or in pain you go through extraordinary lengths to feel better. 3.) I may not be religious or spiritual. Some don’t want that kind of advice. So, instead of asking Have, you tried _____? Try instead: I know you’ve already tried many things to feel better, I’m sorry it hasn’t helped. Is there anything I can do for you?
Why are you on disability? You don’t look sick. Here we go again. Just because we don’t look sick, doesn’t mean we aren’t. Not everything is visible to the naked eye and not everyone is trying to game the system. There are many disabilities that you can’t see, including mental illness which does qualify for disability. You also have PTSD; which you can’t see all the time and you may not know what triggers a person. So, Next time you are out and see someone who gets out of a vehicle parked in a disabled spot, who doesn’t appear disabled, think twice about saying something as they may have a disability you can’t see. Instead try saying: Nothing. Because it really isn’t any of your business and the simple act of asking may trigger someone. Getting disability is difficult. It really is something you earn because you have to fight so hard for it. Just don’t ask.
Push through it. We all have our burdens. I struggled with this one. Another not-so-easy sentiment that is often hurled at patients/people with chronic pain/illness. On one hand we do “push through it,” every day by just getting up and living each day. By raising our kids, going to work, doing the chores, making sure there is a hot meal at the end of the day, going to school, shuttling kids back and forth to where they need to be, by staying at work those extra 2 hours because you were needed- all of this is pushing through because most days are a struggle to get out of bed. And yet, we manage. However, if someone struggles to do these things, or can’t, it doesn’t mean they should just push through it, or even be assumed that they can. These people are legitimately sick and struggling. You wouldn’t tell someone who has a broken leg to just “push through the marathon,” and make it to the end. Or, someone who has pneumonia to “push through it” and go to work. These are things that need care and time to heal. But chronic illness will never get better. What you should say instead: I am sorry you are going through this. I can’t imagine how difficult it is and, I’m here to listen when you need.
You should try and get off meds. It can’t be good for you. What about long-term? First, get your nose out of my business. Second, I think most of us would be medication free if we could. And third, I have legitimate things wrong with me that require medication. It would be nice to think fresh air and sunshine would be enough to make me feel better and cure me of my ailments, but it just won’t. This may sound harsh but, (I think many in the chronic illness community would agree) too many people are concerned about the business that is not theirs. This is my body and I have to try and make the best decisions for it as I can. What you can say instead: It has to be difficult taking all those meds just to try and feel a little better. I wish there was more they could do.
You’re so lucky you get to stay home! I’d get so much done if I stayed home. Let’s get something straight, I’m not on vacation; I’m not staying home so I can clean closets or Marie Kondo my house. I’m home because my chronic illness and pain are so debilitating that I can’t work a regular job. I’m home because more times than not, I’m feeling like crap and the very act of getting out of bed takes everything- all my will power to do. I’m not lucky. I have a lot of guilt about staying at home and not being able to help financially in my household. It would really have made a difference if I’d had a job. So, instead of saying this, maybe try this: It must be difficult staying at home. You must miss that life. Do you want to talk about it?
Aren’t you too young to be this sick? This is universally a stupid question. People can become sick at any age or suffer an accident that leaves them in chronic, intractable pain. Age is irrelevant and shouldn’t be the focal point. Instead, try saying this instead: It can’t be easy trying to manage your illness and all your responsibilities so young.
OMG! I get so tired too. (OR) I worked so much this week; I’m totally fatigued. (OR my fave) You’re too young to be so tired all the time. Okay, vocabulary lesson here. Tired: in need of sleep or rest; weary. Fatigue: extreme tiredness resulting from mental or physical exertion or illness. That really is the key difference between the two words when you are speaking to someone with chronic illness. The tired we experience isn’t the same kind of tiredness you feel after a long day’s work, or after a really intense yoga session. This is the kind of tired you can’t shake even after 12hrs sleep. Even if you caught a nap, it’s a bone-weary tired that you feel all day, sometimes every day and makes accomplishing even the simplest chore, gruelling. Now, being too young? I can’t tell you how annoying this is. People can’t understand why a young person in their 20’s suffers from fatigue because of their chronic illness, or as in CFS (chronic fatigue syndrome aka ME or myalgic encephalomyelitis) is the primary symptom. They can’t understand why a shower is so taxing that a nap is required after to rejuvenate. They assume, wrongly, that they are just being dramatic. Fatigue is a very real thing and it doesn’t obey any kind of age rules. You can suffer from it at 20 or 60. I have 20 something children who suffer from chronic illness and fatigue is a real thing. When I hear people saying damn, lazy millennials, it really ticks me off. What you should say instead: Fatigue is a real thing. You need to take time out and take care of you. If you need any help, let me know.
You need to try yoga. (RME) Or, you need to exercise more. Sometimes, I don’t have words y’all. I have to bite back some well-chosen profanities too. Yoga, while an excellent form of exercise that is low impact and you can modify it for all levels (I was a yoga instructor before my body fell apart and still practice it, though not as much as I should) isn’t a cure-all and shouldn’t be touted as one either. Some people may obtain benefits from yoga, while others may end up needing a week to recuperate, no matter how you modify it. I get the enthusiasm. Maybe it helped you and you want to share it, but everyone is different, with different limitations and abilities and endurance. It may also be that their type of chronic illness or pain levels may be such that it would hurt them more than it would help them. Sometimes I go for months without doing yoga because my body just says “Nope. Not today.” And that is okay. I do what I can when I can. As for exercising more? Same thing. People have to find something right for them if they choose to do it at all. And others may not be able to do any exercise and that is okay. Meditation is really a great alternative, but again, it’s not a cure-all. Instead offer ways they might be able to: sit outside and enjoy the sunshine when they can. Sunshine can be a really great way to shift mood and you only need 15 minutes a day. But I would avoid mentioning exercise at all.
Naps?! You’re so lucky. This isn’t an “I’ve had too much to eat, I need a nap” sort of thing. It’s also not a “Lazy raining, Sunday” type of thing. These naps are a necessity. If you don’t take these naps you literally can’t function. Sometimes, like for me, napping is cyclical. I’ve never been a napper and even stressed out and completely fatigued, I’ll be wide awake. It’s partly due to my bipolar and bouts of mania, but it’s also just me. So, when I do nap I know my body is having a rough time. Instead, say something like: It must be rough having to take time out of your day to nap. (OR) Napping is necessary when you are struggling with chronic illness. I’m glad you can take some time to sleep.
Think Positive Oy. I get people wanting to be positive. I even get people wanting to encourage other people to be positive. I do it. Positivity and having that kind of mind frame can be beneficial to your overall mindset and health. However, having a chronic illness is difficult. If someone is not smiling 24/7 there could be many reasons. The permanency of chronic illness is not something you ever get used to. While it may have been something that began gradually, it feels like you woke up one day never to feel well again. Think about that. Having the flu forever? Sucks right? No one wants to be ill or in permanent, intractable pain. We want to feel good. We want to do everything we did before we got sick. We want to be healthy and pain-free. Instead: Maybe talk to them. Have them tell you what is going on in their lives. How they are handling their chronic illness. If they are truly depressed, they might benefit from talking to a professional about their chronic illness.
Be patient, it will get better. This goes along with “Think Positive.” People seem to forget the chronic; in “chronic illness”. It doesn’t get better. In fact, it’s likely to get worse. This isn’t something where you can convalesce for a few weeks and be as good as new. And the truth is, we’re probably more patient than many out there because we have to be patient for so many things. Patient in doctor’s offices, patient while waiting for a diagnosis (sometimes it takes years to get a diagnosis), and patient with family friends who don’t believe us. What you should say instead? It’s difficult being patient all the time for so long. I’m sorry you have to struggle with this.
If you’re still doing ________, you should stop. Look, if you smoke and have asthma, sure. You should probably stop smoking. I mean really think about it and stop. If you’re going through a 12-pack of Coke every few days and you are a diabetic, you should probably stop. However, not everything has a direct correlation with a person’s chronic illness or pain. Telling a person o cut down their soda consumption will probably not affect their Lupus or R.A. Telling someone they should curtail their alcohol use, while probably overall a healthy idea, will probably not do anything to change the outcome of someone with degenerative disc disease. Truthfully, in all these examples the person is the one in control of their body and it’s their choice of what they want to do. Instead of saying this, my advice would be to: simply encourage a healthy lifestyle. That benefits everyone, without sounding judgmental over a person’s life choices. When you target bad habits (or what you may perceive as bad habits) you only alienate that individual and they are likely to continue what they are doing out of spite.
You have anxiety, see a therapist. While seeing a therapist may be beneficial for many, if you don’t know the nature of someone’s anxiety you can’t just tell them to see a therapist as though that will be the magical fix. Some have seen a therapist and have had a bad experience. Other’s may benefit from things like meditation instead of therapy or other, anxiety-relieving techniques. Some people may not have the insurance to be able to afford therapy which could be quite expensive. My advice: Just don’t tell someone they need to see a therapist unless you truly know their issues surrounding their anxiety.
I hope you feel better soon. -facepalm- Say this with me, “chronic” illness. Again, sarcasm aside, chronic is the keyword here. Chronic as defined in the dictionary: (adj.) (of an illness) persisting for a long time or constantly recurring. (Also) (of a problem) long-lasting and difficult to eradicate. You may have days where you feel pretty good, but it isn’t a permanent state. Instead of saying this, try something like: I can’t understand exactly how you are feeling. I do know it has to be difficult dealing with something long-term like you are and if there is anything I can do to help, tell me.
Everyone has limitations. This one is just yours. There are so many things wrong with this one I just don’t know where to begin. It makes it sound like you should be able to put it to the side and carry on as usual. Chronic illness isn’t something you can put in a box and just ignore. The symptoms can be all-consuming, felt every day and can make life very difficult. Making it sound like this is just your cross to bear is wrong. As though you need to suffer in silence- it’s just wrong. Instead of this try saying: Nothing. Just avoid it. It’ll be better for you and the person receiving it. If you seriously have to comment on this I would say: I will support you however you need. I know you can do this.
I have that too (insert chronic illness or symptoms), so, I understand. (Or) I have _____ too, but it doesn’t affect me as it does you. Maybe you’re on the wrong meds. I am not you and you are not me. that’s a glorious thing. We’re individuals- from the way we think to how our bodies work and respond to medication. So, what works for you may not work for me and vice-versa. You can’t compare your experience with chronic illness to anyone else’s. Others may have the same symptoms but their experience and how it affects them may be quite different. Instead try saying: I’m sorry you are struggling with _____. I may have the same thing but I know it can affect others differently. Do you want to talk about it?
Do you really need that disability placard? (Or license plate) oy… Yes, actually I do. And yes, there are thousands, if not millions of people with unseen disabilities, that need a disability placard. There are so many disabilities that are not visible to the naked eye. People who suffer from PTSD who need to get in and out of the store quickly to avoid a trigger. People with severe anxiety who need it for the same reason. There are others with chronic illnesses which find walking a great distance exhausting. There are many reasons why people may need a disability placard or license plate, not just because you have a physical disability. Instead, try saying this: Nothing. No one should be judged for having this placard. It’s not easy to acquire so you should keep the judgment to yourself.
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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Hello, my intrepid warriors! I’m back for another raw, yet inspiring post. I know many of you out there have been sick for years. Some of you darlings have been struggling your entire life with your autoimmune disorders and chronic pain (I don’t know how you do it!), while the rest of us run the gamut along the timeline of how long we’ve been struggling. I’ve been dealing with my chronic illness for 8 years now. It took me about 4 just to get a diagnosis for three of them and I’m still trying to get the diagnosis for Crohn’s, even though they are treating it like Crohn’s, say it acts like Crohn’s, and it’s unlikely it is anything other than Crohn’s (wait for it) yet they cannot be completely sure that it’s not something else.
In the meantime, we try to do everything right to help ourselves through our illness. We research our illness like the devil so that we eventually become more informed than any doctor, frankly, I think many of us deserve honorary degrees given the depth of knowledge we accumulate. But we don’t just research. Let’s face it even when you are investigating outside WebMD where you are looking at possible death for most of your symptoms (mostly kidding), it is exhausting dealing with the volume of information for out there and so many differing opinions on what those symptoms could mean. You balance this out and tap into how your body works and how those symptoms behave inside of you and what it may mean. We might as well become Sherlock Holmes the way we are trying to connect all the dots and backtrack to the beginning source of all our problems. I think every one of us believes it had to have all started with one thing. Like something in our lives or body had to catalyze all our illnesses and health problems. That it couldn’t just be a random coincidence that at age 36 (just a random age I’m throwing out there) everything suddenly just tanked. I know I am one of those people. I sit there and wonder for hours, like that cat meme where it’s all the figures as he’s thinking how to make the jump? Yeah, that’s me thinking about how this all started. It had to originate with something.
Next on our list of things we try to do right, is keeping ourselves healthy. Many of us endeavour to eat healthy, exercise and even meditate in hopes that one out of the three will lift us from the depths of our misery. But does it? For most of us, the answer is a resounding no. Despite our best attempts at losing weight to make the pain better, eating healthier for various reasons from simply basic health reasons, to boosting our immune system, to even autoimmune guided diets. There are so many reasons people find themselves perusing diets thinking it will help them and it’s devastating when it doesn’t help. Some do reap some benefits and I am not here to tell you not to look for a diet that might help you. Diets can help you even if they don’t help your autoimmune illness. If you are overweight it can help your overall health to lose weight and it can help arthritis and other reasons that some might have chronic pain, to lose excess weight. But if you are going into things looking for a way to alleviate your chronic illness you simply may not find the answer you are looking for. And it’s very frustrating you can try and try to lose weight, be healthy, exercise if you are able and still not feel once ounce better. And you begin to wonder to what end is this all for.
Oh! How about sleep? Chronic illness and chronic pain are notorious for robbing our lives of sleep. We look for ways to sneak more sleep into our lives any way we can and sometimes we can and a lot of times we can’t and even if we can, it may never ultimately help the situation. You can get the 8 hours of sleep and still find yourself smack dab in the middle of a flare. Or you can sleep 14 hours or longer with naps, or be the reverse like me, where sleep is constantly elusive and then you read things like “If you don’t get your sleep, your overall length of life is shortened.” Holy crap on a cracker man! As if I don’t have enough to worry about, I am going to die earlier than expected just because I don’t sleep! That is a lot of stress. And stress, as we all know, can contribute to lack of sleep. And if you have OCD like me, you end up stressing about the stress you are feeling because you can’t sleep, which plunges you further into not sleeping and yeah. It’s a mess. It makes you feel like you can’t do anything right when you are trying so very hard to do everything right.
You can still do everything right, or try to, and suffer from the plague of symptoms that is your chronic illness. It isn’t you, it simply is and you need to remember that some days it’s just out of your hands. You can continue to do what you do to try and alleviate symptoms but forgive yourself and your body if it fails. I always try to stress that when I write is forgiving your body. Your body is ultimately no longer in control. The chronic illness/autoimmune disorder is riding at the helm and your body is like hostage-taking orders. So, if you wake up feeling like crap and all you want to do is sleep and you can take the day off, or maybe take a nap sometime during the day, go for it. Indulge and do what is needed to help yourself through the symptoms. It’s okay.
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Battling chronic illness is a 24/7 job. You never get a break from it. You try to do everything right; you do to your doctors, you take the medicine they give you; you do the therapy they want you to do, you exercise (if you can), eat healthy, get enough sleep, but some days try as you might, chronic illness wins. You wake up and you know it’s going to be a horrible day. You can feel it in every atom of your body and you dread it. Why? You do what you are supposed to. Why does your body, who should be on your side, betray you in such an intimate way? Because it isn’t your body and its chronic illness. Some days are just more difficult for your body to fight it and you have to allow your body the time to heal and get over the bump.
This doesn’t mean that you have to like it. You can be angry and throw things. You can curse and shake your fists at the sky and say, “Why me?” However, in the long run this does nothing to help the situation. Graceful acceptance of your body’s failings will provide more healing than fighting against it. There’s less energy wasted in acceptance, and there is a peace that fills you eventually when you realize and accept that some things are beyond your control. And as much as you’d like to have control over your own body, the chronic illness that inhabits it has more control over what is happening than you do. You have to let it go. You have to look for control elsewhere, in things like how you are taking care of your body, and what you are doing to ease your body when you are having a bad day, rather than being angry that this is happening to you.
Try and be grateful for the gifts that your illness has unknowingly given to you. For example, for me, chronic illness has given me the ability to do what I love, which is write, full time. It has allowed me to be home with my children and be there for them through a considerable portion of their lives to help them when they have needed me. And now, they help me a great deal with doctor’s visits and shuttling me around when I need to go somewhere because I can’t drive. So, while chronic illness has stolen much from my life, I have also reaped some benefits of which I am grateful for and would not have were I not sick.
Not everyone can be home with their kids. It does mean that most of the time we’ve been a one income family, but I have also made up for it in other ways. I meal plan, and make everything from scratch at home. From broth to yogurt when I am feeling up to it and have enough supplies. Sometimes I swear, I can’t keep enough mason jars in the house. I don’t know where they go off to. But I like doing the homesteading on a smaller scale because I don’t have the room to do it on a larger scale yet I’m practicing for when we go to Wisconsin and have our farm. Big dreams!
Closing off here with a reminder that you do what you can, you appreciate your body for what it gives you, you forgive your body for its’ failings and you continue to have a good life. Sometimes chronic illness wins, but it’s only one day out of 365 and even it’s more than that the good days still outweigh the bad in quality. You have to look for the positive in the everything.
I loved this image and the message it conveys. Positivity is not necessarily natural in everyone. It’s not for me. You have to train yourself to see the positive in situations. It’s not easy but as you train yourself it begins to get easier and you begin to think, “Why didn’t I see this before?”
Note from Author:
If you like what you are reading, please click the PayPal button and donate what you can. There is no amount too small and it’s rough trying to fight for disability, having medical bills to pay, kids in college and so on. I am trying to live my dream and my passion by doing what I love, and it’s the only thing I can do because I can’t work outside the home. So, if you can help it would make a world of difference in my life. Thank you from the bottom of my heart.
Throughout history, there have been a lot of misconceptions and negative connotations associated with the word disability. To the point where many outside the disability community, have tried to help those within the disability community and began to say things like “there is no Dis in our abilities,” as a way to show people that just because some may have a physical or mental impairment, doesn’t mean they can’t accomplish the same things as someone without them. Some of those people are very driven in life because of those impairments and it is the catalyst that propels them forward in life. They may have to work twice as hard as their -abled counterparts but it’s worth it for the reward in the end. The proof shows that they are just as capable of doing things. The problem with this, in my opinion, is that it’s not the word that is the issue but the negativity of other people and their perception of the word that changes how that word is interpreted by others. Words are just words that are given their meaning by people and we can change that meaning and how they are perceived. We can also allow people to use whatever words they want to define themselves. It seems only right if they are comfortable with the meaning and connotation of the word.
As a person with a disability, who is only recently disabled within the last few years and has not had to live with a disability all my life, disability doesn’t have the same connotation to me. It means I have limitations, and it means I can’t do the same things I used to, but it doesn’t define me and it certainly doesn’t limit me even though it may limit what I can physically. It doesn’t limit me mentally; it doesn’t limit my imagination and sometimes I can even find ways around the physical limitations to do what I what to do. It just means thinking out of the box which goes to that creativity, which I have a lot of. Now, I understand that some people who live with a disability all their life view it differently. The very nature of the word itself DIS-able has this negative connotation attached to it whereby you are making this insinuation that you can’t do something because you have this flaw. It’s ridiculous. You may not be able to do one thing, but you may be very capable of doing other things.
Some people don’t like using the word disabled and that’s ok, but others are perfectly comfortable with it. Some people prefer cripple, others don’t. Some people prefer different words to identify themselves and that is okay too. It shouldn’t be up to anyone else to say how we should identify ourselves, or worse, tell us what is right or wrong about how we identify ourselves. This is such a personal decision. Not even under the guise of trying to make things better or more inclusive for the disability community because that is unfair and not we asked for. Words become negative when they are used in negative ways. I don’t believe that words are inherently bad. I think if people in the disability community are okay with words like disable and cripple, then they should be allowed to use them. This belongs to them.
I believe people in the -able community should be sensitive and respectful of how those in the disabled community want to be called. It doesn’t take that long to ask someone how they identify or what they prefer to be called. Respectfully, I think, because they are the ones with the disability. They are the ones who have been navigating this in their life for however long and if anyone gets to dictate how that makes them feel, it should be them. I know at the beginning I was very much against being called disabled and forget about crippled. That might as well be a curse word. I’m still not okay with that one, but disabled doesn’t mean the same