Thursday 27 February 2014

The Other 'F' word.

I've been on the 24/7, 365 day chronic illness ride for years now. And it's a not a ride I recommend.

It reminds me of the first time I went on the Cha Cha at our local show. For years I'd begged my parents to be allowed on the ride. But I was always too young, too short, too something. When I finally managed to convince them I was ready, I was filled with excitement. I stood in line for 20 minutes, little red ticket held tightly in my hand. I was barely able to stand still with anticipation of what was to come. Then I stepped into the carriage. Strapped myself in. Felt the first stirring of the machine and...., it was meh. We went round in circles, in and out, up and down, but there was little of the excitement that I'd built up in my young mind. All that anticipation, all that waiting, all that disappointment. It was immensely frustrating. Just like life with chronic illness.

By that I don't necessarily mean the physical symptoms that accompany a diagnosis. They are not fun to deal with. They can be challenging and downright scary at times. They stop you from doing what you want and impact all aspects of life. But that is a small part of the frustration. 

Frustration comes from dealing with the system that is supposed to help you when you become ill. It comes from waiting. Waiting. Waiting. Waiting. I swear I have spent most of the past 8 years waiting. Waiting to get into see a doctor. Waiting to get the tests they recommend booked in. Waiting for the results to come back. Waiting to get back in to see the doctor to discuss the results. Waiting to get the medication recommended. Waiting to see if it works, does nothing, or makes you worse. Waiting to review it at the next appointment and so on.

I have had times where I waited so long to simply be triaged to get an initial appointment with a specialist that my referral ran out and I had to wait again to see my GP to get another referral to then be sent off to then be re-triaged. Ugh. It does your head in.

Wait for this. Wait for that. The "Lets wait and see" approach to medicine, is an instant mode of frustration for patients. Lets wait and see if the symptoms you are experiencing get worse. Then we may see if we send you for tests or try a medication. Wait for worse. Wait for time to go by, for life to go by. Wait for worse, for a potential of help, with an equal potential for no help. It's easy to tell a patient to wait. It is hard to be that patient. Living with illness 24/7, not just the 10 minutes in an office.

Wait for this program. Wait for that med. Wait. Wait. Wait.

Don't worry, you're sorted. We'll get you A, B and C. Oh wait no there's a catch. A caveat on page 36 of the deal. You'll have to wait. Jump that hurdle. Find that loophole.

Oh there's a med that will help but we can't get it for you. You don't meet the criteria. You can have it if you mortgage your house, give up your kidney, or your soul.

You can have this test. But not you over there. Why. Because I said so. Because I wont tick this box or sign this form. I am the keeper of the keys and you will bow down before me.

We'll test one leg but not the other. But both are weak? Well pick one, Sophie. The choice is yours.

Wait some more. Try again. I wont read that. I wont ring that specialist. I wont run that test. You looked it up? Keep off Google. Stop self-diagnosing. But no you must be your own advocate. It's okay to ask for a second opinion. Do it. Take control. But only if I say so.

Wait. Wait. Wait. Hope. Try. Disappointment. Hope. Try. Disappointment. The cycle goes on and on. Eat this. Don't eat that. If you don't do what I say you don't want to be better. I have a friend of a friend who's third uncle twice removed knows a guy who has that and he's fine.

Take that med. No that is poisoning your body. There must be a doctor. Try harder. Wait in line. Stop focusing on your illness. Think positive. Fight. Be inspirational. Wait? You're focussing on your illness. Stop that.

Harry's here to help. But only a little. To get you excited. To yank out support at the last moment.

Fight. Fight. Fight. Find the energy. Drag yourself up. Don't concentrate on wellness. Concentrate on the system. Fight it. Jump through hoops. Be a performing animal in the circus and you just may get a treat.

Frustration. Unending frustration. Obstacles. Road blocks. Be a good patient. Do what we say and we'll open the door and let you look through. We'll let you see what's on the other side and then we may or may not let you go through. The rules change. Do you know the password? Can you answer the riddle? Or rub your stomach and pat your head?

Frustration. Wait. Follow the rules. Know the rules. We wont tell you the rules. You must find them out. Follow the clues. And maybe you'll be given a hand. But no the rules have changed again.

Do it my way. Do it your way. Do it this way. No not that way.

Frustration upon frustration. When all you want is the luxury to focus on wellness. To focus on being as well as you can be. 

And the grey hairs sprout and the soul gets weary.

And not from the illness, but from all that surrounds.

Excuse me whilst I step into my background and let out a primal scream. To exorcise the boiling frustration. So I can start playing the game once more.



  1. This could be written about our struggle to get help for Boo. Before all the Early Intervention was sorted and the govt was all 'take him home and love him, this therapy will help immensely but you will have to sell your home and your other childrens childhood to provide it'
    And we did.
    I am very bitter.


  2. Oh this is Me at the moment, my patience is hanging on by a thread, and the meds i've been given to keep at bay the stomach problems are giving me horrible side effects that I Could have anti-biotics for for the duration, but They are really nasty ones that my body has screamed at before, hmm, what should I do? :>{. All this because, as I said in FB post, I have been told When the Autonomic Unit find my 2nd referral from gp it will be 9 months until 1st appointment to hopefully sort stomach out - F f f f f f f sakes! Trying to use my little bit of calm brain to meditate my way through this, and will keep Tonglening for you too dear cyber friend, have a lovely evening out on Saturday xx

  3. Why? Is it a power thing? A money thing? Is it their training? Were they taught badly? Are they jaded? Is there only so much they can remember? Was it just cos they had a bad day? Or is it because they are virtually untouchable, hiding behind the patient's inability to sue (in New Zealand)? Would that make them any better? I want to understand doctors and the system they work in, but they won't even confide in us. Aren't interested in getting us on-side. Argghhh!!!!

  4. Dear. god. yes.

    How I wish that I (and so many others) did not identify so strongly with this.


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