The problem with your but (it’s not what you think!)

~ Reflections Of A Bear

*deep breath*

It’s been over a month since my last blog post. I didn’t fall off the face of the earth; I just received some news that I needed time and space to process. I still haven’t finished processing, but I’ve reached a place where I’m more able to talk to people about it. Yet, despite reaching that place… I still haven’t blogged about it.

I realised that part of the reason for that was because I was afraid of all the big buts.

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No, not big butts – big buts. You know, all the “But, have you tried…?” and the “But why don’t you just…” that people offer.

I know that when people make such suggestions to me, it’s often because they care. They want to help me to get better, and I’m genuinely thankful for that.

But it also gets really frustrating when you’re chronically ill, and people (usually those with little understanding of the body, or how my conditions affect it) are always making suggestions about how I could “fix” it.

Imagine if I followed a trained plumber around and, despite having no knowledge of plumbing, constantly made suggestions to him about how he could do things better.

“Welding that seems really drastic. Why don’t you just wrap some tape around that dripping part? That would be much cheaper.”

“You’re gluing that up? But there’s so many chemicals in glue. Why don’t you just replace that part with a new one?”

“I think the problem is probably in that bendy bit there. I know the crack is up the top, in a part that is nowhere near the bendy bit. But my friend’s aunty’s grandma had the same problem, and it turned out the bendy bit was to blame.”

Could you blame the plumber if he got frustrated?

I’ve been sick for 13 years. In that time, I’ve learned a lot about how the body works – particularly my body. I’ve read medical papers. I’ve consulted people trained in medicine, all different specialities of it. I’ve talked to other chronically ill people about what helps them. I’ve tried medications, supplements, medical aids (like compression stockings) and therapies (like mindfulness and getting some sunshine each day). Despite all of that, I’m still not cured. That’s because my illnesses are complicated (affecting whole systems of my body), and most likely have genetic components. I’ve learned that there is no quick fix. So please, forgive me if I’m doubtful when you suggest that your best friend’s cat’s vet can cure me (yes, that’s something that someone has actually suggested to me!).

20130107-cat-good-vet-4

I trust the people who are currently on my medical team. And the decision that we’ve reached together is one we’ve made because it’s the best for my health and long-term quality of life. But it’s still a difficult decision. So if, instead of offering support, you tell me that I just need to dance under the moon on the 17th cycle of Mars around Venus, while chewing on kale and rubbing fish oil into my ear lobes…it frustrates me. It hurts me. It makes me feel like you haven’t listened to a word I’ve said. It makes me feel alone.

So… the big decision…

I’ve spoken before about how I have adenomyosis (where the lining of the uterus grows inside the muscle of the uterus, instead of just lining it, and tears and bleeds inside the muscle each month). It’s excruciatingly painful. But, for me, the worst part is the heavy bleeding. I spend several days each month stuck in the shower, because I’m bleeding so heavily that a shower is the only way to stay clean. Fluids are precious when you have dysautonomia, and iron is precious when you are so limited in what you can digest. Every month, I lose lots of both, and all my dysautonomia symptoms are worsened because of it. I spend the rest of the month trying to climb out of the symptomatic hole that menstruating pulled me into, only to be dragged back down into it the next month.

Adenomyosis can often be managed with hormones (either tablets like the contraceptive pill, or devices like an IUD) or strong anti-inflammatory medications. Unfortunately, I can’t have hormones because of my genetic clotting disorder (unrelated to dysautonomia). And, because of my digestive issues (totally related to the dysautonomia), I can’t have anti-inflammatory medications either. If you have endometriosis (where the lining of the uterus grows in places other than just inside the uterus) as well as adenomyosis, an ablation can sometimes help. But I’ve already had a laparoscopy to check for endometriosis, and that came back clean.

So we’ve decided it’s time.

StopHammerTime

Sadly, not hammer time.
Hysterectomy time.

A small part of me is excited. I can’t imagine what life will be like when I’m not spending so much time each month in pain, or crippled by the loss of so much fluid. And thankfully my ovaries are healthy, so I’ll be keeping them (meaning I shouldn’t go into menopause).

But a big part of me is sad. I’ve always wanted children. I’m not well enough for children right now (neither to carry a child, nor to look after one), but I’m young, and I was comforted that there was always ‘later’. Now, there will be no ‘later’.

Yes, I realise that having a hysterectomy doesn’t bar me from interacting with children ever again. I have plenty of nieces, nephews, music students and Church family kids to spend time with, when I’m well enough. And if I suddenly became healthy, I’d be quite happy to look into surrogacy or adoption. But I still grieve. Not just the loss of the ability to carry a child, but also the fact that I’m not well enough to do so anyway.

*      *     *

brace

While I brace myself for the buts I’m going to receive when people learn of my decision, I’ll leave you with some that my chronically ill friends have shared with me.

Please note, many of the things mentioned can be helpful (e.g. massages help me to manage my pain). But all of these buts were suggested as a CURE for the person’s chronic illnesses, as in “just do this, and then you’ll be fixed”. 

Chronic illness is hard. Constantly having to fend off people who want to shove their buts in your face doesn’t make it any easier.

I’ll start you off with some little buts.

But have you tried to cure yourself by…

  • Taking a panadol?
  • Having a massage?
  • Going on a holiday?
  • Getting some sunshine?
  • Taking lots of vitamin C? 
  • Taking supplement xyz?
  • Drinking chamomile tea?
  • Drinking more water?
  • Getting up more slowly?
  • Retail therapy?
  • Sitting by the water and thinking happy thoughts?
  • Exercising? (they did regular personal training before becoming ill)
  • Quitting diet coke? (they didn’t even drink diet coke)
  • Eating more meat?
  • Eating less meat?
  • A paleo, autoimmune protocol, gluten, soy, egg, red meat, dairy, caffeine, preservative, additive, fructose, sucrose and artificial sugar free diet? 

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The buts get bigger though: weirder, more dismissive, and sometimes even dangerous.

BUT you could cure yourself if you just…

  • Breathed less
  • Got rid of your pets
  • Got a boyfriend / girlfriend
  • Focused on something other than your illness, like training for a marathon
  • Had a baby: then you would be too busy to worry about anything else
  • Had some kids: then you wouldn’t be able to afford to be sick
  • Bought an exercise bike and went flat out on it until you fainted, to ‘reset’ your body
  • Attached a device to your nose to shine a light up it to help with your dizziness
  • Stopped all of your medications, so that your body can correct itself naturally
  • Stared into the sun for an hour every morning at 7am
  • Got hypnotised to teach your blood pressure to regulate itself
  • Saw this practitioner who can help you to connect to your higher self and resolve blockages to fix your illness (note: the practitioner’s qualifications were a one weekend course).
  • Saw the lady that has helped two of my friends at the bowls club: she manipulates your genetics (note: when questioned, the person had no idea how it worked, what her qualifications were, how much it cost, or what her experience with chronic illness was). 
  • Got re-birthed by an osteopath (because your problems are from your traumatic ‘first birth’)
  • Changed your image of yourself, so that you no longer identify yourself as someone who needs a wheelchair (note: said to someone who faceplants without a wheelchair).

And my all time favourite, from when Claudia (Sick & Tired) shared about her struggles with dysautonomia and endometriosis in a news article. Someone read the article and then commented…

“Please chant ‘NAM MYOHO RENGE KYO’ for normal muscle tone.”

Claudia graciously tried it, and you’ll be disappointed (but probably not surprised) to hear that her muscles didn’t ‘tone’, and she is still chronically ill.

(Uh oh! A reader has written in with something that might be my new favourite! D’s Mum had a car accident six years before D was conceived. When D became chronically ill, someone told her that it was because of “the trauma of being conceived in an egg with ‘left over vibrations’ from the car accident” and suggested she needed to receive “energy clearing treatments”...
I mean, how do you even respond to something like that?!)

*      *      *

When you offer me a cure, my heart jumps a little bit. For a split second, I get excited. I want to be well. I really, really want to be well. So when you offer me something that can do that, I am on top of the world. And then the cart slips off the side of the mountain, and I crash back down into reality. I know what is wrong with my body, and that what you’ve suggested is not going to cure it (and will often actually make it worse). And then I’m crushed. For that short moment in time, I was so excited about being cured, that I totally forgot it hadn’t actually happened yet. And when I come back down to reality, it’s like becoming sick all over again. I’m reminded how limited I am. How long I’ve been suffering. How many things I’ve tried that haven’t worked.

And while I’m being consumed by all those emotions, you’re standing there, waiting for me to enthusiastically respond to your suggestion. And I just… can’t.

cantgiphy

I know that if I tell you that I’ve already tried your suggested ‘cure’, and it didn’t work, you’ll most likely blame me (I didn’t buy an organic enough supplement / I didn’t trial it for long enough / I didn’t see this particular hypnotist). If I try to tell you that it won’t help with my particular condition, and politely decline to try it, you’ll most likely accuse me of not trying hard enough to get better – maybe not even wanting to get better. And that couldn’t be further from the truth.

So, what am I saying? Don’t ask me if I’ve tried something? Never suggest things you think might help?

No, that’s not what I’m saying. Please understand, I actually don’t mind when people are genuinely interested to know if I’ve tried something, or want to suggest something for me to try. There’s just three buts I’d like to wave around first.

You can suggest something to me, but…

1. Please don’t present your suggestion as a ‘cure’ that is going to ‘fix’ me. I know what I have is complicated, and might be hard for you to fully understand. But this part is pretty easy to remember – there is no cure. So if you come to me expecting me to be cured by your simple fix, it tells me that you either haven’t been listening to me, or you don’t believe I’m actually sick. Both are hurtful, and neither make it easy for me to listen to your suggestion.

2. Please trust me. Be okay with the fact that I have a deeper understanding of my body and my condition than you do, and trust me when I say that your suggestion isn’t something that will help. Remember that I really do want to get well; so if I thought there was even a slight chance that your suggestion could help, I’d be excited to try it.

3. Please think about the time and place for making suggestions. Don’t stop me for an in-depth chat about supplements while I’m trying to make it through my grocery shop without passing out. Don’t interrupt me to suggest yoga therapies while I’m trying to share with you a difficult medical decision I’ve had to make.

*big sigh*

Want to know a secret? There is something that you can do that’s almost guaranteed to be more helpful than any suggestion you could make. Take the time to ask me how I’m coping, both physically and emotionally/mentally. Ask me how you can help.

Offer me your heart and hands…

childholdingheartret

…instead of your but.

xx S.

Published by Reflections Of A Bear

Just a bear thinking deeply about chronic illness...

28 thoughts on “The problem with your but (it’s not what you think!)”

  2. Always loving and praying for you xxx I spent a stack of time cooking today – for my family for work days and yay heaps more meals coming for Mr Happy for your recovery time this week.
    I’m here. I’m praying xxx It’s all I can say. Xxx

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  4. You are brave, You are strong and you have a deep capacity to love everyone, even those that may unintentionally want to think they control your wellness.
    You are already a mum to all of us chronically ill. We may be older or not that much younger, or far away from you, but you still offer us wisdom and comfort when we need it the most. That’s the very definition of a mum.
    So thank you from one of your Chronically ill babies 💗

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    1. This beautiful comment made me cry! Most of the time I don’t even know if anyone is reading what I write, let alone being helped by it. I’m so glad to hear you’ve received help and comfort here ❤

      I'm not sure I'm qualified to be a Mum, but I am honoured to have you become part of my *family*.

      xx S.

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  5. Hi,
    So sorry to hear of this news in the Journey that is chronic health.
    We will be thinking of you and praying for you.

    I’ve yet to make contact with you (through your Cousin Logan) but have nearly got my head around our daughters symptoms.

    Someone recently gave us
    Psalm 3:3 But you, O Lord, are a shield about me,
    my glory, and the lifter of my head.

    No quick cure but a constant friend and a gentle but strong place to rest and hide 🙂

    T & T ox

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    1. Thank you for your prayers, and for the beautiful Psalm ❤ A constant friend and a safe place to rest and hide is invaluable, particularly in this broken world.

      I have been praying for T, and will continue to do so. I'm here whenever you're ready to talk xx

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  6. Whenever I read your blog I constantly wonder if you have secretly climbed into my mind like a ninja and read my thoughts. As always your writing is so clear and similar to my own thoughts and actions. I’m sorry to hear about the hysterectomy, but happy to know that you are taking everything in stride and not allowing yourself to get too stressed. My thoughts and hopes are with you in this similar journey we share ❤

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    1. I can assure you, I am definitely not ninja-like in real life! More like a bumbling bear, ready for hibernation ^_^

      But I’m glad that my writing can help others to feel less alone. ❤

      xx S.

      (P.S. Autocorrect totally wanted that sentence to say, "I'm glad my writing can help otters to feel less alone". Honestly, autocorrect, you write the strangest things sometimes! Otters can't even read!)

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    1. Thanks Joyce 🙂

      I’m healing slowly but surely. The doctor tells me I can expect about another month before everything is knit back together, and then I can bounce back into life. (I did have a private giggle to myself. I have multiple chronic illnesses, I don’t “bounce”, I drag myself around! But then I thought I probably do bounce a little when I faint and hit the floor. Thankfully, that hasn’t happened since my pacemaker got put in last year though. So, no bouncing here!)

      xx S.

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  10. I am so sorry I disappeared and read this only today. School had me caught up real bad. But now I’m very sad! *hugs tightly* I wish I could do something that could help you. Perhaps use up all my wishes that I get in this lifetime and hope you get cured because of them? If this was possible, I would do it.
    At least, the pain will be lessened? It’s a small comfort 😦
    But I’m glad that we got to hear the reason for your disappearance. I was really worried! ❤
    Love you a whole lot!!
    ~Diksha

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    1. Hello lovely! I have missed reading your stories – Bear and I look forward to catching up on them soon.

      Bear was excited to hear about all the wishes you were sending, until I told him that wishes aren’t edible. He huffed a bit about that, but when I explained that wishes were something you use to get things that you want, his eyes got real big. He wouldn’t tell me what he was wishing for, but knowing Bear, it was probably a never-ending paddock of strawberries 😉

      xx S.

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      1. Oh, I missed my adorable Bear! Tell him that he can use his wishes elsewhere ’cause I’m getting him loads of strawberries anyway! ❤
        And how are you now, love?
        Don't worry about the stories! I haven't had much time to write anyway… 😦

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  13. I just found the link to this on FB. I am in love with this post. I also have Dys, along with all the fun comorbidities that go with it, including full body RSD/CRPS and Gastroparesis*. Fun, eh?

    My rheum is actually looking for what triggered it in the first place, when I was eleven. The best guess right now is Acute Intermittent Porphyria, a genetic disease, which fits perfectly. However, there’s really little to no treatment, and the genetic testing I’d need to diagnose it is $900, which may or may not be reimbursed by insurance. I want to know what it is, but I also want it to be somewhat treatable, you know? I’ve been too sick for too long to ever believe I can be cured of any of my disorders, known and unknown alike. I’ve known for a very long time that I will never be healthy, no matter how many inane “but have you tried” therapies are suggested to me. I almost cried at your description of the momentary elation you get when you think, just for half a moment, that maybe you’ll get to be healthy, before reality comes crashing down with a vengeance. I was trying to explain that earlier and was unable to manage it at all, let alone how perfectly and eloquently you’ve described it here. And of course, the blame we get for not being magically cured by their nonsense/actual treatment we tried a decade ago. It’s infuriating and heartbreaking and most of the time, it’s worse than being sick itself actually is.

    I’m proud of you for getting a hysterectomy. I know that was probably one of the hardest (but also easiest, if that makes sense) decisions you’ve ever had to make. You must be heartbroken, which is made more difficult to deal with thanks to the hope that you may be able to lead a better, healthier life, even if you can’t carry your future children. A lot of mixed feelings, I’m sure. I have no doubt that people are questioning your decision, and lecturing you as if they actually know what they’re talking about, or how difficult this decision is for you, but I just wanted to tell you again how proud I am of you. You’re making the right decision, which I’m sure you already know. Ignore all of the Google MD assholes who think they know better than you and your doctors about your health issues.

    Btw, I’m pretty non responsive to all POTS treatments, so the best thing I ever did for that was to get my service dog. He can tell before I pass out, and will brace himself to keep me upright. If I do fall, he stands over me until he can brace again to help me stand back up. He also does cardiac alert, and if my HR gets too high, he either makes me sit down, or guides (drags) me to a quiet place until I can get it lowered a bit. He’s flat out refused to let me go back inside until it was down to 115. Such a jerk. I can’t believe this dog is more stubborn than I am! But he’s definitely the best thing I’ve ever done for my mental and physical health, that’s for sure.

    *You mentioned digestive troubles from the Dys, but (sorry!) have you actually been tested for Gastroparesis to rule it out? A lot of doctors, even specialists, aren’t familiar with it or don’t consider it if you aren’t diabetic. It took them eight months of near-constant vomiting up of everything I ate and drank, as well as all esophageal and stomach lining, for them to diagnose me. I was 48 hours away from major organ shutdown. Wee! So if that’s something you may have, it’s a good idea to get ahead of it with an accurate diagnosis. Mine was so far gone that the few treatments for it didn’t work, and I had to get a gastric pacemaker. I’m really lucky I was a candidate for it, and so thankful for the freedom it’s given me. My diet is still extremely limited- mostly by choice, since I’m autistic and a vegetarian- but I can actually eat food. Real, solid food that’s not through a tube!! So exciting.

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    1. Hi! I’m glad you found me! I have dys + some fun comorbidities too.

      “I was trying to explain that earlier and was unable to manage it at all, let alone how perfectly and eloquently you’ve described it here.”

      Well, I don’t know about perfect or eloquent! But I’m glad you found it helpful. ❤ That's the main reason I blog: to get the words down for those that can relate, but can't find the words to express it themselves. I especially love making posts that chronically ill people can share with their non-ill family and friends, to help those people 'get it', and be better able to support you.

      I am familiar with gastroparesis (have many dys friends who have it) and wouldn't be surprised if there's some element of that going on: but haven't been able to pursue testing for that yet. You know how it is, there's always a whole list of health stuff that needs doing, and you can't do it all at once (and sometimes you get tired of it, or too sick to do it, and it all gets put on hold for a while!). I'd like to pursue MCAD testing first, because food isn't the only thing I'm becoming increasingly reactive to: I'm also becoming intolerant to a large list of medications, which is making pain management after surgeries quite difficult.

      Service dogs are amazing! My chronically ill sister got a golden retriever puppy a few months ago, with the intention of training it to be an assistance dog for her. Training a puppy is a lot of work (she got this one at 7 weeks old)! But I think it will be a great companion for her.

      I do have a dog, just not a service dog. She's a 9 year old female Kelpie. My husband and I rescued her just after we got married, 7 years ago. Love her to bits, even without the service dog traits. It's just so wonderful to have a small furry friend, who loves you unconditionally, and is always pleased to see you!

      xx S.

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  14. I just read this today, too (probably the same Facebook link as Lindsay) and I’d like to say thank you for your eloquent post. I cried. Living with incurable, chronic, often genetic, disorders is hard enough, without knowing that people think that we are somehow faking it. For the attention? I get much more attention on my better days, when I can get out and about and call in on people. In the three years since I came home, precisely none of my friends have visited me at home. Not once.

    On the other hand, I’m very, very lucky – I was able to have children before I became too sick to look after them (although having them nearly killed me; pregnancy was not something that my body was good at by any means), so my hysterectomy was an unmitigated blessing. But my sister wasn’t able to have any of her own. That led to great feelings of guilt on my part, you can imagine. Eventually, though, she and her husband were able to adopt. Her son was born the same day as my eldest grandson, so we love to tell people that I became a grandmother the same day she became a mother, even though I’m only five years older than her.

    Raising kids is very hard, relentless work, if also immensely enjoyable. I’m not sure if I did as good a job as I would have done if I hadn’t sometimes been seriously ill, but they have grown up to be kind and thoughtful people. I only wish I’d managed to stay adequately well long enough to be a bigger part of my grandchildren’s lives.

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  15. ❤ I want to apologise for my post causing tears, but it sounds like they were the cleansing kind *big hugs*

    "Living with incurable, chronic, often genetic, disorders is hard enough, without knowing that people think that we are somehow faking it. For the attention? I get much more attention on my better days, when I can get out and about and call in on people."

    I totally agree! I wish that people (especially doctors) would realise that if you were going to fake something for attention, it wouldn't be a chronic illness that leaves you stuck at home, separated from everyone. It wouldn't be an illness that means you can't go out with your friends, can't work, can't even leave the bed some days. A real attention getter, right? Because, you know, all those people that spend every day just hanging around by my bed? Well now that I'm stuck in it, I get their undivided attention. (AKA, there's NO ONE HERE BUT ME guys! So faking it for attention from who?!)

    I mean I'm married to Mr Happy, and I get plenty of attention from him 🙂 But no more attention on a bad day than when I'm having a good day. In fact, I see him LESS on a bad day, because I have to sleep so much! And he goes out to do things with friends, while I stay in bed resting, wishing I could go to.

    So if was making this up for attention, I would have stopped long ago, because what you get with chronic illness is the opposite!

    xx S.

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  17. Wonderfully written. I relate to so much of this. And I’m sorry you had to have a hysterectomy. It would have been a huge decision to make. I had one about a year ago and while it wasn’t pleasant, at least I have children, so that made it easier. And at least one part of my life certainly improved. I hope it does for you too.

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