Fibro Life

Don’t Speak……Don’t Tell Me ’cause It Hurts. What NOT To Say To Chronically Ill People. Part One.


Chronically fit and well people (and, I suspect, those with a degree of health issues that also have escaped formal dx for whatever reason) simply do NOT understand chronic illness. They just don’t.

This is evidenced by the ridiculous things they trundle out for our “benefit”, their pearls of wisdom that are supposed to either encourage us or belittle us into some sort of miraculous spontaneous recovery from whatever ails us, which is usually something really quite minor, in their opinion.

Here are just some of the things I am sick to death and back of hearing:

1.   “You sleep too much, that’s your problem!”  Absurd. Anyone with a working brain cell will tell you that (sleeping pills notwithstanding) it is literally impossible to MAKE yourself sleep. It can’t be done. If it could, insomnia wouldn’t exist. We sleep because our bodies are knackered, exhausted, wiped-out, fatigued, tired, whatever name you want to put to it. We sleep because our bodies dictate that we do. And just as it is impossible to force sleep, it is also impossible to force wakefulness. There is only a certain amount of caffeine or other natural stimulant substances you can shove down your throat before you throw up or precipitate an anxiety attack.

2.   You just need to push a bit harder, dig a little deeper! You give up too easily!” Really? Could you be any more insulting? We push and dig continuously, but when you hit a brick wall and hit rock-bottom in the same breath, what are we supposed to do? We have no dynamite with which to blow a handy hole through these physical obstacles of exhaustion, pain, nerve damage, migraines, nausea, vomiting, dizziness, fainting (and those are but a few of our common physical problems), nor the non-physical obstacles of depression, anxiety and sheer dread that can overwhelm us at any time. Yet we still don’t give up. We strive to achieve any semblance of our pre-illness lives, instead of putting up with our now-lives. We DO push harder, we DO dig deeper, harder and deeper than a Normal can ever understand. We have to, just to get to the bathroom. And when we’ve pushed super-hard, because sometimes there is no other option, or because we’ve been forced to by a hideous government or a well-meaning “friend”, or by family circumstances beyond our control, we suffer horribly for weeks or months afterward.

3.   “Well how come you managed to attend your parent’s anniversary party/ friend’s milestone birthday party/ babysit for me that time/ go to that support group meeting/ have that day out/ make that medical appointment recently? You were alright then!” (Sigh). You really don’t get it, do you? There are some things we either WANT to do in the name of Normality, and some things that we HAVE to do, that people will NOT accept that we can’t do without invoking the hideous effects of a violent flaring of our illness. We are expected to attend medical appointments, with or without help, because to DNA (Did Not Attend) gets us marked down as “Difficult” or “Uncompliant” patients, which by definition means we obviously have no wish for the medical professions’ help. There are some things, especially with family, that cannot be gotten out of. There are some things we desperately NEED to do so we can reassure ourselves that there is even the tiniest shred of normality left in our lives. We NEED to go out occasionally to retain any vestige of sanity. On these occasions, we stoke ourselves up on extra meds, extra supplements, extra support. We use walking aids, or our carer/ partner/ friend pushes us in our loathsome wheelchair (few of us have the strength or stamina to use a self-propelling chair). We might even get excited at the prospect of participating in a social occasion – and the dopamine rush we get from this has a massively positive effect on our normal inability to do these things. Why can’t we continue to do that? Because overdoing the meds is damaging to our already fragile health, and you can’t do it long-term. Because dopamine runs out. Because it exhausts us and puts us back to bed for weeks or months at a time. Because it overwhelms us. BECAUSE IT MAKES US SICKER.

4.   “You should try to be a bit more positive, focus on what you CAN do, not what you can’t!” Why? Will that cure me of my progressive, chronic, incurable illness, or will it just cheer YOU up and make you feel less bad about me and how you don’t want to be around anymore? Ok, here’s what I know I CAN do, at the moment: I can experience pain, depression, nausea, vomiting, episodes of collapse, episodes of suddenly-not-working legs giving out on me, exhaustion, insomnia, headaches, migraines, brain-fog and floods of tears on an alarmingly regular basis, field stupid comments from ignorant individuals, and compile my next List Of Things To Research In The Hopes Of Finding A Way To Be Well Again. I’m great at falling asleep during the day, despite having (sometimes) slept for a block of hours at night. I’m terrific at making plans, only to have them felled by my body as soon as I try to action them. Oh, and I’ve started writing a blog so that people like you can understand how insulting and absurd your comments are.

5.   “The most important thing is to be positive!” Like everyone else with a chronic illness, I hear this a LOT. I think it reached a veritable peak when I had breast cancer. Everyone – and I mean EVERYONE – seemed to feel the irresistible need to say this to me, especially if we were meeting or talking about it for the first time. I grew rapidly, heartily sick of hearing it. Thus, when it was said to me by a breast cancer treatments nurse, I was furious. My capacity for smiling and nodding politely in response to this inane bit of sparkly fairy-dust had been exceeded. I rounded on her. “Do you have ANY idea what you’ve just said to me? Do you?” “Ummmmmm…….”, replied the poor, well-meaning nurse.  “You’ve just said that if I die from this disease, if I don’t somehow beat it, if it gets me, it’ll be my own fault for not being CHEERFUL enough!!! Do you see how damaging that statement is?” “Oh,” she said. “I hadn’t thought about it like that before.” Well, please do! It is NOT our fault that we are ill. It is understandable that we will, on occasion, succumb to feeling less than “positive”, because we are feeling scared, miserable, unhappy and depressed, not to mention having to deal with unrelenting levels of pain that you seem incapable of comprehending, AND the attitudes of people like you who do not understand / refuse to understand. And anyway, the most important thing FOR ME is to find a way back to well-ness again, to get my old life back again, thankyou very much!

6.   “I don’t know why you think you’re so tired – you do nothing but sit on your arse all day.” You knew me before All This. You know I was a highly active, busy human who loved nothing more than being able to do sixteen different things at once. You think I WANT to “sit on my arse” all day? (And to be strictly accurate, sitting is too painful, I spend most of the time lying or semi-lying down.) I don’t want to lose my days to “sitting on my arse”, but if the alternative is throwing up, passing out, screaming in agony or otherwise collapsing, what am I supposed to do? And I don’t *think* I’m tired, I AM tired. I’m tired in a way you will never understand, because however tired YOU get, you will always recharge through sleep. Fibro removes restorative sleep. We wake up as knackered as when we closed our eyes.

7.   “I don’t know what you think you’ve got to complain about – you’re living the life of Riley, lazing about in bed all day, watching daytime TV whilst your boyfriend/ husband/ carer/ mother runs round doing everything for you. I should be so lucky!” Really? You think this was what we dreamed of when we planned our lives? To be a burden, to feel guilt and shame, to feel inadequate and useless and in-valid, to feel so pathetic because we need help just in getting to the toilet and cleaning ourselves? Would you REALLY think you were lucky if pain and disability literally stopped you from doing all the things you love to do? Like generating your own income, paying your own bills, choosing, buying and cooking your own food? Like going out and having a social life? Like dancing? Doing sports? Working at a job you loved? Would you REALLY think you were “lucky” if you had to deal with the sheer unremitting relentlessness of  our myriad of symptoms? The pain, the depression, the never-ending, always-expanding list of new system failures that KEEP coming up? REALLY?

8.   “Angry? What have YOU got to be angry about?” (Accompanied by reciting point 7 above) Oh, I’m ANGRY about a LOT of things! I’m angry that I am now dependent on daily meds for the rest of forever. I’m even angrier that those same meds are screwing my already fragile health by messing up my liver and giving me an endless stream of new side-effects to add to my existing symptoms. I’m angry that I can’t work. I’m angry that I can’t take care of myself without help. I’m angry that I am made to feel like a scrounger when I finally admit defeat and ask the government for help. I’m angry that I’ve been sent to see a psychotherapist who wants me to *admit* that all my problems are in my head, because otherwise he can’t validate his job. I’m angry that people like you, who apparently loved me when I was well, don’t want much (if anything) to do with me now I’m ill. I’m angry at being so isolated from life, and the people I thought were my friends. I’m angry that my illness went on for so many years with no acknowledgement or help from the medical profession. I’m angry it took me so long to get a diagnosis. I’m even angrier that my diagnosis isn’t the answer I needed to get me back to health, because I spent years thinking that once “it” was identified, “it” could and would be fixed. I’m angry that I can’t be the wife my sweet, kind, darling husband deserves to have. I’m angry that the treatments and meds I’ve been on for years now have caused me to gain nearly 100% of my original slender, small, borderline-skinny old self. I’m angry that people see this fat, older sister of Wally The Whale lumbering around with a walking frame and think I must be the Girl Who Ate All The Pies. I’m angry that I am judged, continuously.

And for now, dear readers, I’m going to have to stop, because writing this has made me angry all over again, and I’m getting another migraine as a result. Part two will follow later – I’m not finished yet!

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17 thoughts on “Don’t Speak……Don’t Tell Me ’cause It Hurts. What NOT To Say To Chronically Ill People. Part One.

  1. Reblogged this on luvbearlvx's Blog and commented:
    There are hundreds of thousands of people like us out there. I am “luckier” than most in that I have irrefutable medical proof that I have a rare chronic disorder. Many of us are not that lucky. Think before you judge and speak people! Otherwise you richly deserve whatever diatribe you have triggered!

    Liked by 1 person

  2. I agree with you heartily Tessa. I have had some chronic issues. Not debilitating. For a period of about five years, it all went out of control. In that period I was scared to no end.

    This is despite a wonderful husband with good insurance and a lot of moral support from loved ones. But there were also enough people with advice.

    The reason was the uncertainty of it all. From one minute to the next I could not predict what would happen. Over a period of time, the anxiety takes a crippling toll.

    Today when someone tells me about any type of chronic issues, I try to tread carefully, because even though I may not understand it all, I can relate to how stifling life can be, when so much could go wrong without any warning.

    Sometimes despite warnings you need to go on because there are things that needs to be taken care of like you have written in the article for which your body will punish you with a vengeance.

    Keep writing..

    Like

      1. I agree with you. The way I see it is when chronic health issues reach an overwhelming point its best to take it easy.

        I let go of a lot of things. The one thing I did was chuck all the negative people out of my life. I could not take it anymore. I realized with the limited amount of energy I had, it would be wise to ration it.

        I had only a fraction of issues relative to yours. I still have those issues, but they mitigated to the extent that it does not interfere with my daily life(I don’t want to jinx myself here, so knock wood).

        So, do what you are doing right now. Listen to your body. Take it easy when you have to, push yourself, just a tad when you can.

        Liked by 2 people

      2. Thanks 🙂

        I really hate having a filthy house. Makes me feel like scum. 😦

        My fibro was manageable before chemo, but still interfered with daily activities, just not EVERY day, though it was progressing. I was already having fewer good days and more bad days even then then. Now I don’t have good DAYS, I get the occasional splurt of a couple of good HOURS.

        I’m glad yours is still manageable. If you’re still working, get your finances secured via insurances etc now. You don’t want to be relying on the state to support you if it gets so that you can’t generate your own income anymore. X

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  3. I get enraged when I hear such trite nonsense but hold it in and don’t respond. And with death in family what words can we offer despite sincere intent? That “If you need anything…” really gets me. Sometimes saying nothing and giving a hug is best of all.

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    1. I think it’s tricky. What works for one person doesn’t necessarily work for another. For me, as long as I felt it was sincerely meant, someone saying “If you need anything…” would be very welcome. It’s judgement and ignorance that get my goat about people’s attitudes to life, death, and illness/health 🙂 And I think that’s why I wrote this – I’m too much of a people pleaser (I hate upsetting people or hurting their feelings, and I try to avoid confrontations because the stress does me no good at all) so these are all things I wish I could say to people in my life. Most of them have stayed in my head so far, apart from the nurse’s “positive” comment and my
      Mum’s “attention” one.

      Like

      1. Our health is unique, just like us. We all have generalities, but our DNA or fingerprints or retina’s are unique. Health is same way. The human health is hardly well understood.

        The brain mapping has just begun for crying out loud. They just finished the bacteria map. Imagine understanding all this their interactions, and how the DNA environment and other factors affect this.

        I agree with you about the intent of the person inquiring about these health issues. That goes for everything, because each one speaks their own language and its good to discern.

        Liked by 1 person

      2. Indeed, Lekha. And language is a tool that must be used so carefully in order for the intended meaning to be clear. So many problems are caused through misunderstanding what someone’s written or said. X

        Liked by 1 person

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