#1 Only the old get sick:
Illness does not discriminate.
We are fair game.
#2 Looks reflect feelings:
If you bumped into me in the street, you would not think that I was suffering.
I may appear to be okay, maybe a little tired, but on the inside my muscles are aching, my head is spinning, my stomach is churning.
What needs to be known is that I can leave my house looking decent, but feeling absolutely terrible.
#3 Stress reduction techniques cure illness (ie exercise, meditation, yoga):
When people hear that you are unwell, they assume that the things that usually provide average people with a better wellbeing, will help you. This includes Exercise, Meditation, Diet Change, Juice Cleanse & Detox, Yoga etc.
This is incorrect. I encourage the Chronically Ill to try these, as they may provide a temporary relief for symptoms, but they are not a cure!
#4 Being home all day is a dream lifestyle:
The first few weeks of being stuck at home are okay. They are hard to adjust to, but okay.
When you get to the two, six, eight month and year marks; being stuck at home every day is not as great as you think.
Why do people think we are at home, jumping for joy, throwing parties?
I’m not sure about you, but I’m usually crouched over the toilet, riddled in pain, having anxiety attacks, crawling on the floor, huddled in foetal position. I am bored by my daily routine of doing very little, as I am only able to do very little.
#5 If the illness cannot be formally diagnosed, then it doesn’t exist:
The symptoms I feel are very much real.
Just because it is not coming up in tests, does not mean that it does not exist.
People just want a title, as it helps them validate it.
Don’t feel like you owe anyone a validation.
Trust your instincts, as you know your body better than anyone else.
#6 We are ill because we are depressed:
This is such an offensive statement.
I have depression BECAUSE I am ill.
#7 We cannot date when we are ill:
We may not be able to go out to fancy restaurants or to bars/clubs, and be as active as we once were, but there are ways around this, and most importantly there are people out there who are willing to do these things with us. You just have to find them. Do not think that you will be alone forever, or that you won’t find anyone because you cannot meet people in a social environment.
#8 We are doing this to ourselves:
I’m not entirely sure how people come to this conclusion.
Maybe because they are unsure of how to accept the illness themselves.
It is again really offensive to imply that we are purposely hurting ourselves, or lying about being this ill.
I can assure you that we are not doing this to ourselves.
What would we have to gain from it?
Our lives are pretty messy, and our bodies non-negotiable.
#9 Having good days means that we are cured:
When an important occasion arises, we learn to put up with the symptoms of our illness, including terrible pain, so we can try to enjoy what we’re doing, especially being in the company of others. As the days past, we grow a tiny bit more accustomed to the symptoms. So then you ask, “Well why can’t you put up with it every day?”
We are exhausted. We cannot put on a brave face every day. We are entitled to rest, or else we will go backwards in our health. We are the ones who suffer behind closed doors.
One should not assume that a person who is laughing is a person who is pain-free or feeling “good”.
#10 Medication fixes everything:
Just because I am being trialled on medication, or have been given medication for a diagnosed medical condition, does not mean that I am cured. Medication assists in keep us on track and relieving symptoms, but it again is not a cure for our illnesses.
I also believe that Medication helps when you have a formal diagnosis. If you are in limbo, like I, and are being trialled on medication after medication, you can be left feeling more awful than you did before. People do not understand this. They just assume that “medicine fixes everything”.
#11 We are lazy because we are on Government Allowance:
I used to work a fulltime job working overtime, and ten days in a row at a time.
I then moved to Childcare and worked and studied fulltime, earning a generous pay packet weekly.
I do not enjoy being on Government Allowance.
Just because our bodies are weak and we are unable to do certain things, does not mean that we are lazy and don’t want to. It is not as easy as telling someone to get up and work.
I physically cannot do it at the moment, but that does not mean that one day I won’t be able to.
I, alongside many others, are striving to achieve that.
#12 Eating more will help you put on weight:
Firstly, if we are talking about me, you have to get my stomach to work!
Being constantly reminded of your weight loss, and being pushed to eat food like a garbage disposal is not the way to approach the situation. Eat as much as you can. Eat what you can. You know your body better than anyone else, and you are in full control of retraining it. The weight will come in time.
If only future people will become educated about what life is like for the chronically ill, so that some day soon, all above will be seen as uncommon misconceptions and we will be better supported in our struggle!
This is a followup to my first post “What you shouldn’t say to someone who is chronically ill“. Take a peek if you get a chance. I hope you like it!
I especially like #’s 5 and 12. Thank-You
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Thank you!
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You did a terrific job putting these myths to rest. I have such a difficult time understanding why people find it all right to deny what you are feeling or what you can/can not do. They don’t realize that it is painful. My son compensated by never allowing anyone, not even family, to see how he was feeling. I wish I would have stepped up more for him. Thank you for writing. I am going to reblog this.
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Thank you so much.
I don’t think anyone understand until they go through it. It is extremely tough. I know how your son feels! He is strong! xxx
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Thank you, but sadly my son lost his battle with chronic illnesses. He was the strongest person I ever met. He was and still is my HERO.
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My sincerest apologies! I cannot imagine what you or he have experienced. He must’ve been incredibly strong. That is so lovely that you call him your hero! xx
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Please, no apologies necessary. How were you to know? Thank you for your sweet words. 😊
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Reblogged this on I Am Not Sick Boy and commented:
If you know anyone with a chronic disease that is not obvious from the outside, read this piece I found on Indisposed and Undiagnosed.
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Cass, this resonates powerfully with me – except #12, because my steroid-induced weight gain from 8 1/2 stone to 15 st is the opposite to your difficulty, but people assume that I must be over-eating to have achieved an almost 100% increase in weight. Maybe if we could combine ourselves then separate (like the Jeff Goldblaum and the fly in that movie) we’d both come out nearer our healthy weight! Got a pair of pods handy ?
L. X
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Haha, if only people took a walk in our shoes, hey? Then they would understand truly xx
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Oh, I think their pain would be SO much greater than anything either you or I could POSSIBLY imagine, Lol!
L. X
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Great post.
I often find that “healthy” people are a little unmindful, and sometimes flippant towards those of us who suffer silently, or invisibly, but those who have never suffered on the inside, mentally, or physically, will always find it hard to empathise with those of us who have, they just lack understanding. – Or perhaps they’re just fearful that we might become aware of their own weaknesses if they were to open up to us, in the same way that we’ve had to open up to them.
Take care, E. Just stay as strong as you can.
-“Problems with Infinity” – has a very creative blog that cheers me up every time I visit. My blogs pretty dark, I’d stay away if I were you, it’s just me exorcising demons.
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Thank you!
I will check them out.
My posts are in between haha if you catch me on a good day!
It’s okay to write dark things. I’m exercising my demons too, and trying to accept this illness.
xxx
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I think that chronically healthy people are afraid that they will “catch” or illnesses. Preposterous, i know, but i entertain other analysis and comment. ☺
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Your contribution here is outstanding!!!
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Such a lovely thing to say!
Thank you
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It occured to me that it might be all about recognition and (!) help! When people don’t recognize your illness, forcing you to do the same, you may collapse. A little understanding can do so much…!!
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@cassandrarei – what time is it with u?
L. X
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Well it is currently 830am.
I am exhausted and will reply to your comments soon enough!
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Yeah, I figured u’d gone to bed by the time I got to answer u – sorry about that! Just tucking down myself. Threw an all-nighter last night, wish I hadn’t had to. Wrecked now, need sleep, legs all swollen up. Catch up when I wake up again.
L. X
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Okay darling. Sweet dreams xxx
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T’ankooooooo :-). Xx
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Hope u feel less wiped in a bit. Mornings are always my worst time, so u have my sympathy. It’s shit waking up more knackered than when u went to bed – another thing Normals don’t understand!
– Another thing they say, “How can u be so tired when u sleep so much?”
And my all-time favourite, usually said with *that* head-tilt, “You sleep TOO much. That’s why u feel so ill. You can have too much sleep, u know. It was in the paper.”
Arrrrrggggghhhhhhhhhh!
L. X
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Hahaha I get that one too!!!
Enjoy your sleep x
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So you’re 9 hours ahead of us. X
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@corrosiveabuser – I share your compassion for Normals’ ignorance. On a good day.
The rest of the time, I think “Fuck RIGHT off!” Lol
L. X
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Every single one is absolutely true. My first pcp yelled at me because I wouldn’t take antidepressants. My mother thinks it’s just mostly in my head. My mother in law thinks I’m faking it. Even with documented proof of the nerve damage they can’t seem to wrap their heads around it. I guess because they can’t see it. Like you said I put on a smile and laugh and they think I’m fine. It’s hard enough trying to live so sick all the time and then, unlike someone with an obvious or visual illness, we have to prove and defend ourselves. I completely understand how you feel!!
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Would you believe the private disability company I was on before SSDI (government) used # 9 to dismiss my claim and quit paying me. Luckily I got my government payment the same month they dropped me.
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Government are threatening to take mine at the moment too. They think I am fine to work… Which isn’t the case. And because I don’t have a formal diagnosis… It makes things a hell of a lot harder!
I know the feeling!
xxx
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Good luck with the benefits. It is so hard nowadays.
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Thanks Tessa! Yes it is. They want to know absolutely everything. Just another thing we need to worry about xx
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I so believe! The variance in compassion between any number of case workers is staggering. Depending on the day, the time of day and position of the moon, a claim can be granted, challenged or denied, all by the same person (s)!
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You did a GREAT job describing this. Every person and every doctor should read this. I especially loved what you said about depression. I said that exact thing to my doctor. And about looking okay but feeling like crap. “But you look good…” People say the dumbest things. Someone told my friend that she is sick because she didn’t do her positive affirmations. It is infuriating.
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Thank you! I hope to spread awareness through my little blog, haha. Even to remind sufferers that they really aren’t alone in all of this xxx
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These things drive me fuckin’ nuts. I am so tired of the lack of basic common sense, the unwillingness to educate themselves before speaking, and the total absence of the tiniest shred of human compassion that we have to deal with from people ignorant of chronic illness. It makes me hate human beings so much.
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#11 for sure! I work my ass off, I actually run all day on the yard. The bosses know my work ethic, but damn if the illness hits, I may blow up, or just get lethargic, I continue to work no matter what, but the boss noticed somethings, he advised me to take some time off. So, I did.
People who don’t have it, don’t understand it!
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Couldn’t have said it better myself if I tried. It’s all exactly the truth… each and every one of them.
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Thanks honey. I look forward to reading your post! I hope everything is okay
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Reblogged this on Undiagnosed Warrior and commented:
Too true and so perfectly written, I couldn’t not share.
Still working on my update. A wrench has kinda been thrown into today’s plan, but stay tuned. It’s coming.
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Thanks for your transparency and genuineness 🙂
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That is so lovely. Thank you
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So true! So relatable!
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I have a diagnosis. The disease is NOT curable. So, I know for sure I will NEVER get better. Not a good thing in my opinion.
To try to get through the days, I have to have poison dumped in my veins to keep me moving better for about 2 weeks. Then I have to wait another 2 weeks to get my next dose of poison through my veins. Every 28 days I feel better. Even after my infusions, I cannot walk. Used to throw 175 pound bales of hay for a living in grade / high school. Miss being able to lift weights. I did not cause myself to get sick. Turns out I inherited it from my mother’s side of the family.
It is not in my imagination. Even though I have a very active one!
Jeanette Hall
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I can kind of relate to this article due to my anxiety. I feel like a lot of people are under the impression that I want to feel anxious or that I’m doing this so I don’t have to “grow up”. Some people don’t seem to get that I hate suffering from anxiety. Some people will just never understand and because they don’t suffer from the same thing, they think you are faking or just trying to do things for attention. However, there are others who understand. Stay strong.
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Perfectly said!
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Thank you! And thanks for the reblog!
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You’re welcome! I’m happy I’ve been introduced to your blog.
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That is so sweet. My symptoms are bad today so I will check out your blog later in the day. I am sure I’ll feel the same way about yours! X
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I totally understand. Rest up and I hope tomorrow’s a better day for you. I’ve got a #8 migraine so I’m gonna sign out myself. Take care. 🙂
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Reblogged this on MigrainePuzzlePieces.
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This is perfect! You got into my head and eloquently articulated many of my thoughts and frustrations. Thank you! I will most definitely share this with others. I’m glad I stumbled upon you on Twitter. Linda
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I didn’t even know I was on Twitter!
Haha. I think this may be from someone’s reblog! But thank you so much. I appreciate it. I’m just trying to spread awareness for sufferers, so every reblog or ounce of feedback counts! xxx
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Beautifully put as always. Would you mind if I re-blogged this on my other blog http://www.theillrepresented.wordpress.com ? And do you mind if I ask what country you’re from? I hope to do some new posts about how those of us with chronic illnesses face similar problems no matter which country we’re from. x
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Of course! I’m from Australia (:
I can’t wait to read it xx
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Thanks! I hope to write the posts in a few days x
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I very much like this and to think this is the 21st century
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Thank you!
I know – hard to believe.
That’s why I am trying hard to spread awareness!
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You like that… Chronically healthy…
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great blog……thanks for all your wonderful thoughts….
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Reblogged this on FibroFeels.
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Reblogged this on Invisible Pain Warriors.
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You given me something to think about.
🌞Have pain free day. 🌞
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8, 9, and 12 really ring loudly with eating disorders. If only it were as simple as that!
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I like this a lot. Especially the dlfact that people really just don’t understand at all!!! My partner and his family are so poblvely because they remind me it’s ok because I didn’t choose this, I can’t help it! Where as most of the depression and anxiety I have and the time I spend beating myself up about it is because I’m afraid that people are going to judge me and have a go at me for it and question or criticize my illness or do the whole **sighs-rolls-eyes-here-we-go-again** expression! It’s like Erm no! Why don’t you try it and see how you feel?!?!! Definite reblog!!
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Thanks honey! & for the reblog!
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Reblogged this on herglutenfreefitnessblog.
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Reblogged this on The Professional Introvert and commented:
check this out
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Thank you
It’s nice to see that others know my pain but I’m sorry that you all have to feel it.
I once had a doctor ask me to describe the pain I was in at that time. I told him to picture a white hot needle about 12 inches long, now imagine that needle stabbed through his spine from between his shoulder blades all the way into the base of his scull. The idiot called me a liar, and that was the first surgeon I fired. I have a very high tolerance for pain, I once broke an arm and didn’t tell my parents for 5 days, what a mistake that was. It hurt worse when they re-broke it, I was 12.
Finding others with similar problems is inspiring. I’m severely upset with the way things are going in the chronic pain world right now. It hasn’t had any effect on my treatment yet but I know that it’s coming soon enough and started my blog to try to stop it before it starts. The only issues I have had thus far is the increased costs. It’s truly unfair how a single change in a law can cost the average person so much and the government should have taken that into consideration prior to changing the law on pain medications. I just hope others feel the same way. Again I enjoyed your page and hope you hang in there.
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As person who been sick his entire life, this resonate with me to the core. As guy it even worse, because other men tell you to act tough and I do from time to time, until I hit my “limit” and twice I gone pale on someone before collapsing.
And it so hard for people who are not sick to understand what like to fight with an illness daily, it tiring. Some night can’t even sleep, some days it nothing but pain.
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Reblogged this on BIKELEPTIC.
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thanks so much for posting this! yes so much! This is my life. I reposted it on my blog (Hah without your permission) guess what?! You are a guest post! Let me know if it irritates you – I don’t want to seem pushy or invade on your writing. I definitely made it clear I didn’t write it at all.
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That’s okay, as long as my name is somewhere in it! Haha
Much appreciated. Your kind words mean a lot to me xxx
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Reblogged this on Gentle Kindness .
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Reblogged this on Explore America with Kids and commented:
As a sufferer with multiple abdominal and cardiac issues, I can relate! Fortunately, I am still able to work full time, but fighting my illnesses drain me and I am exhausted on my time off.
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Love the ‘being home all day is a dream lifestyle’
I get a lot of that sort of comment many times in the last 5 years since being forced to quit working. Usually when I’m outdoors doing photography. I usually say…. well you can have my chronic pain (FM & CFS), exhaustion, severe Cardiomyopathy, MCS, IBS, PEM, all the surgeries (including 2 spinal surgeries which still leave me constant nerve pain and have left me with permanent nerve damage in one foot), falls, cognitive dysfunction and I’ll have your wonderful healthy life and income.
Let’s swop.
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