Living with invisible illness – Healthy people ambushing the chronically ill

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Last night I was feeling needy and I reached out to a friend who has been offering her support for many months.

“You can lean on me…talk to me, I’m here for you.”

Lovely stuff.  But…I don’t lean on people.  Long experience has taught me not to.  Why?

Well, this is what happened. And it was far from the first time. It was about the 37th time.

I reached out and told her that I was feeling down and started to tell her why.  I got one sentence out of my mouth.  One sentence.  Before she jumped right in with her solutions for rheumatoid arthritis.

There is so much wrong with this I just want to scream.

First, dear friend, you are not familiar with the depth or extent of my health problems, or any of my problems.  You know I have rheumatoid arthritis and you knows a little about that.  You reads my socials but I’m sure you don’t remember about my bone disease, pituitary tumour, eosinophilic diseases, gastro stuff, neuro stuff…you just know a little about rheumatoid arthritis.  But rheumatoid arthritis is far from my biggest problem.   I’m an ensemble piece and all my problems together are a problem in itself…the sum of the whole is greater than the parts, so to speak.

Second, one sentence.  How can you possibly understand the problem if you give me ONE sentence before you jumps in with your ideas? 

No complex problem can be accurately summed up in one sentence.  Even if I had known that I only had one sentence to describe my problems there’s no way that I could have summed it all up in a cute one liner. Not with a year of practice.  Not if my life depended on it.  How can you possibly formulate a solution when you’re basing your understanding of the problem on 90% pure assumption?  Things you’ve made up in your head?

Third, I was looking for support, not advice.  Support means listening, understanding, and basically saying kind, empathetic things to make me feel better.  A big verbal hug so to speak, given that we live many miles away from eachother and I’m mostly housebound anyway.  

I wasn’t looking for you to launch into a veritable presentation on How to Cure Neen.  It actually sounded rehearsed, it was a litany of advice and directions and most of all, a referral to this amazing integrative GP in rural Victoria. 

There’s even more wrong with THAT but lets finish the first batch of wrongs.

It was an ambush.  She’d had this idea in her head for months that this one brilliant doctor could cure my rheumatoid arthritis, clearly.   I mean, she was impressive in the way she gathered her facts and evidence, she knows me well enough to know that I need evidence at least.  She knew I’d need convincing, but she’d invited me to lean on her, confide in her. She told me she was HERE for me. 

That, to me, means emotional support.  Friendship.  Empathy. Compassion.  Companionship.  Maybe even commiserating together.  It’s a two-way street, but she’d expressly offered to provide support to me.  So finaly, when I was feeling very low, I called her up to lean on her.

And since I reached out to her for help, its reasonable of me to assume that we might actually talk about MY problems…not jump straight to her well-rehearsed solutions.

And instead I get a kick in the head.  Do this, see this doctor, he’ll put you in this amazing diet, and he’ll cure you.  He cured great Aunt Bertha of her Myasthenia Gravis (which is a little like RA, granted.  But if you take a moment to google it, you’ll see for some people it can be self-limiting and disappear all on its own, which means Dr Wonderful most likely didn’t do shit.)

I didn’t ask for medical advice from someone who is not a doctor and who knows nothing about me, my life and how my chronic illnesses affect me.  I didn’t ask for medical advice from someone who can’t even spare the time to listen to me.

I wanted kindness.  I felt bullied, harassed and ambushed. 

That would be bad at any time, but I was reaching out because I was feeling particularly bad, particularly down and sad.  She chose that time to lecture me and effectively diminish my 15 years of disabling illness and pain to a simple condition that could be easily fixed if I would JUST see this integrative GP. 

All in my hands. But ofcourse if I WANT to stay sick, I can ignore her precious advice.  Most offensive of all…emotional blackmail and victim-blaming. 

Whether it was her intent or not, she said my disease is entirely within my control to fix.  That its up to me.  What a load of bullshit,

The truth is much for the depression associated with chronic illness is due to exactly that lack of control.  It’s not being able to control your own body, not being able to predict from day to day how “well” or otherwise you will be. Not being able to control pain levels and function.  Not knowing if you’ll be able to go out for a coffee or be struggling to make it to the bathroom without assistance.  Being at the mercy of a body that’s majorly malfunctioning and all of it absolutely way, way outside of your control.

But she insisted I could be cured.   Which made me feel disbelieved.  How can I trust someone who doesn’t believe me?  I can’t. I now know that she believes my illness is not as bad as I say and can be cured if I try hard enough. 

I wish that were true.  But its not. 

My life has to be about accepting limitations and making the best of the function I’ve got.  You’ll find me focusing on what I can do a lot more than on what I can’t do.  That’s how I keep it together and keep getting up every day with a smile. Its how I find joy in a very impaired life. 

To be honest I think I should be applauded for my attitude and the way that I cope, not demeaned and belittled and told to try harder and for goodness sake go fix myself!

Underneath this attitude is an even more sinister core believe that being sick is bad. That being disabled makes you worthless. That you’re a burden.  That you shouldn’t accept limitations and life the best life you can, you should keep slaking yourself on the red hot coals of chasing endless treatments and “cures” from professors of medicine and charletans alike, because nothing is worse than being disabled!

Ablest? Yeah.  Every treatment, every surgery, every new medication comes with risks and potential benefits.  Its far from a simple “take two aspirin and call me in the morning” when you have complex medical conditions and live with disabling pain.  There’s always the chance that what you do will make things worse.  Any intervention can make things worse.  Another thing that healthy people forget, or never consider. 

She was wholey and solely convinced she was right, correct and had ‘the answer’.  She probably knew I would never ask her for advice so she started working on me, encouraging me to lean on her. Its so manipulative to lure me in with promises of support and kindness, only to be wet-fish slapped with an evangelical sermon on How To Cure Neen when I was at my lowest ebb.  It’s also so very arrogant and egotistical…because I’m sure she meant well.  I’m sure she thought I’d be making an appointment today, making the eight-hour trip to rural Victoria soon and then singing her praises and thanking her profusely forever more.  That’s how her mind works.  Its her world, I just live in it.

That’s not what she got.  I didn’t say much, except “I actually needed your support, you just talked at me for 40 minutes and I haven’t been able to get a word in edgewise.”

Which is the other problem. When you offer someone a shoulder or an ear, you’re supposed to allow them to talk.  Letting me speak one sentence does not make me feel better. Its actually immensely frustrating because I really did want to talk…need to talk.  I felt shut down and shut up and ignored.

Most people listen to one sentence and then dump their troubles on me. That’s the other very, very common scenario.  “Talk to me” they say.  “I’ve got a shoulder for you.” they say. And when I try I get one sentence and they start telling me about their crappy husband, their shitty career, their annoying brat kids, their meddling mother in law, or even their nosey hairdresser or their lousy manicure.  Serious stuff.

And I don’t get to talk. I don’t get support.  I sit there and listen, because I’m polite. 

I am left feeling used and abandoned…again. 

But this was worse, I think.  She didn’t tell me her problems, no this was more like moralising and I even felt chastened that I hadn’t been trying hard enough to cure myself.   There’s this fabulous doctor that can cure a very curable disease, so why wasn’t I beating down his door for my grab bag full of incurable diseases?

I wish I’d been able to get a few words in. I wish that I too, had rehearsed my speech. I think I will have to prepare one for the next time we speak. I wonder how she would like me to recite this in a 40 minute performance without once allowing her to interject. 

My speech would go something like this…

“If someone trusts you enough to reach out to you for help…they want you to listen. They don’t want your advice.

They need support. You can’t help if you don’t understand the problem. And much as you think you understand the problem…how can you possibly understand when you only listened to the opening sentence?

I’ve been in severe, daily pain for eight years. I’ve been in daily pain for 15 years. I have tried medication, meditation, mindfulness, psychology, CBT, ACT, positive fucking thinking, hydrotherapy, physiotherapy, occupational therapy, cortisone injections. facet joint injections, epidural injections, radio frequency ablations, decompression surgery, arthroscopic surgery, spinal fucking fusion at three levels, tens machines, reiki, naturopathy, homeopathy, Chinese medicine, acupuncture, energy fucking healing, salt baths, massage, Bowen therapy, yoga, Pilates, essential fucking oils, weight training, jogging, running, crossFit, nutritional therapy, I’ve gone vegan, paleo, keto, fasted for 5 days out of 7, 3 days out of 5, water fasts, juice fasts, high protein, low protein, high carb, low carb, high fat, low fat, swimming, pool walking, pacing, pushing thru, resting, talk therapy, rheumatology, neurology, gastroenterology, immunology, ophthalmology, endocrinology, gynacology, hepatology, haematology, neurosurgery, orthopaedic surgery, integrative medicine, functional medicine…and this stupid cult that believed that if we all hold hands and drink warm milk with herbs, their god would heal me. I’ve tried prayer, mine and other peoples, I’ve tried affirmations. I’ve studied bible verse, eastern philosophy and Japanese wisdom txts. Of and I’ve tried ketamine too. I’ve tried heat and cold. And I’m fucking left very luke warm.

You know what works best? Medication. Science. Evidence based.

You know what doesn’t work? All of the other things I tried.  To be fair a lot of things help some…exercise, healthy diet, maintaining a healthy weight, meditation…all good things.  But they are not curative.  And they do not replace medication.  Taking my medications allows me to be as well as I am capable of being.  The medication allows me to use other adjunct therapies…like exercise, meditation etc. to improve my health, fitness and quality of life.

I am currently seeing at least four of the best doctors in the country.  At the top of their fields.  Highly respected, celebrated physicians.  They know their stuff.  I’m also seeing another six or seven doctors regularly who just manage one symptom or organ system.  They’re good too.

None of them know exactly what’s wrong with me, individually or as a collective.  I have a bunch of signs and symptoms that fit into some diagnostic categories, but not in others.  It’s not a clear clinical picture. There are all kinds of anomalies.  But basically I have extremely high bone density, I have a pituitary tumour that has messed up my metabolism, I have gynaecological problems including endometriosis and adenomyosis, I have multiple rare allergies, including exercise anaphylaxis, and I have a few autoimmunes including mixed connective tissue disease, rheumatoid arthritis and hashimotos.  I don’t fit any diagnosis neatly, I have many, many diagnoses but I’m not “typical” in any way. The bone density is likely the key to unraveling everything, but it is literally a 1 in 3,500,000 people finding.  It is THAT rare.  So no one is quite sure what it means…just that it might be sinister or it might be benign.  I have had some red flag symptoms and the biannual cancer hunt is always scary, but I’m grateful that I have not developed anything terminal.  I am working hard to keep it that way.  Far from “wanting to be sick” every day I work hard for every ounce of life and function I have.

My immunologist, hepatologist, neurosurgeon and endocrinologist are all heads of their respective departments at the teaching hospital.  It’s one of the best in the country.  Do you really think an integrative GP knows more than the collective knowledge of these guys?  Do you think an integrative GP is going to find something all of these guys have missed?

No? not likely. 

Here’s what will happen if I go see your doctor  All he will do is run the same old basic bloodwork.  He will find the same things…be confused.  Tell me all my blood work is basically normal…he can’t find a major problem.  Maybe run a few scans.  Find some anomalies in my bones and marrow IF he looks that far.  Most likely he won’t.  He’ll stop at the basics, maybe run a few integrative tests which aren’t covered by medicare and are ludicrously expensive but have limited diagnostic value.

End result?  He won’t know what to do next.  And I’ll be out of pocket several hundred dollars. Maybe more.  Sound like fun?  No?

Then stop telling me I can be cured and stop telling me that I can be well if I want to be.  Its abhorrent to tell someone who is living with disabling illnesses and has a very low quality of life that they just need to try harder.  Keep searching.  Keep chasing doctors.

I have tried harder than anyone I know.  No one wants to be healthy more than me.  But I would prefer to focus on enjoying my life to the best of my ability and trusting my team of very experienced, highly educated specialist physicians. 

My energy is limited.  My time is limited.  My upright hours are limited.  I’m not going to waste it.

I need to tell her how betrayed I feel.  I’m sure she won’t understand why it’s a betrayal of trust.  Why I feel she deceived me and let me down. I thnk its fairly obvious, even for young players, but it boils down to this:

I been sick for 15 years. I have done it all, tried it all. Do you really think you know something I haven’t thought to try? 

You know what I was asking for? Support. You know what I wasn’t asking for? Advice.




1 COMMENT

  1. i always remind people that everyone knows the only way to cure rheumatic disease is to drink a mixture of liquid artichokes, diced maple root, chopped grass form the left side of the right football field on Tuesday and cabbage blended with grape juice and drank at five times per day for 297 days.

    That usually stops them with the stupid cures. Hey my cure is as science based as the rubbish they arr spouting. At least no once can try mine. Because the cure is non existent. same as their crazy ideas. psst. I haven’t got time for such ridiculous nonsense.

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