I’ve made a medical discovery, so listen up doctors! It is called tough cookie syndrome. It goes something like this for me, but feel free to adapt to your own patients’ particular circumstances.
Patient doesn’t feel well so you, the kindly general practitioner, start the diagnostic process. A scan or two here, a blood test or ten there. A specialist or two gets invited into the mix. Way too many tests come back positive. In the meantime the patient (that’s me in this case) is trying to lead a normal life: work, look after the family, balance the budget now ballooning with medical bills. You tell the patient to take three days off; patient says two will be plenty – then ends up crashing out of a meeting on day three. Yes, I know you have patients to whom you suggest three days rest and they plead for four. Those patients don’t have tough cookie syndrome. I’ve realised I often tell the doctors “I’m fine” when they ask how I am. Of course I’m not “fine”! That’s why I’m there!
As my gastroenterologist says to me, “You get it.” I do get it: medicine is not an exact science. It can take time to get a final, conclusive diagnosis and therefore appropriate treatment and even then “conclusive” is subject to the next blood test throwing up a curve ball to you and the patient. Drugs and dosages have to be tweaked and monitored. You have patients like me who don’t look sick on the outside. I giggle everytime I see my endocrinologist and rheumatologist. On my first visit to each of them they both announced I was seeing too many specialists: I said I was MORE than happy to reduce the number any time they felt it appropriate! I’m still seeing all three specialists. I looked OK on the outside (and probably said “I’m fine”): the blood tests and scans told a different story. My gastroenterologist and I talked about this on my last visit: he’s seen me “bad”, the other two haven’t. During one consultation I had to keep running to the bathroom and trust me leaping off the examination table and dashing down the corridor might make a great medical comedy skit but in practice it feels bloody embarrassing. I don’t think I told him I was fine that day.
I can’t stop trying to be Wonder Woman, but I’m failing miserably. I should say I am failing miserably by my own assessment. I think my doctors just wish I’d accept my situation and stop fighting it. All that does is increase physical and psychological stress, both bad for my health.
But patients like me suffer this tough cookie syndrome. We can keep going, of course we can. So we wake up and think, “Yes, I’m 50% better than yesterday, I can go to work.” We don’t take into consideration the fact being at work is a lot more taxing that being at home “pottering about”. Pottering about leads to feelings of guilt: we should be at work doing x, y, z. We feel guilty about letting our staff down, our peers down, about not doing our share. Then our medical knowledge, limited though it may be compared to our doctors’ medical knowledge, kicks in and we know we are under instructions to reduce stress. So we feel guilty about feeling guilty. We should be able to “do it”. I don’t know about others, but I know I constantly question myself. I can’t be this bad, I tell myself. Sick people are in hospital, I’m not in hospital, therefore I can’t be THAT sick. Stupid thoughts that serve no useful purpose and merely result in me trying to do things I shouldn’t try to do.
We don’t sleep properly (all the guilt keeps us awake), that means we are tired. We catch a virus and discover the drugs we are on compromise our ability to fight the virus, yet we can’t not take the drugs. The virus becomes a battle in and of itself. We feel guilty about that. So we try to tough it out to relieve the guilt. Logically we KNOW this is not to our benefit but we do it anyway because, yes, we have tough cookie syndrome.
There is no blood test for tough cookie syndrome. It is a behavioural syndrome, we are not wired to be unwell. Hey, I’ve improved! You want a blood test? I get the blood test – I no longer (as I used to) put it off because work or family responsibilities were “more important”. I recognise the tests are a means to an end: helping you do your job for me.
I accept help to ensure I get sleep. I know it is important. I don’t want to take yet ANOTHER drug, but I know I have to sleep. I get the exercise I have to have. Managing these conditions is hard work which has to be juggled around the cut down version of the life I used to have, the life I so desperately want back but am slowly realising I may never enjoy again. Doctor, I’m not sure your definition of rest and mine are the same. When I rest I have to still DO something, to feel a sense of achievement from my day, to feel I am still a functioning human being with a brain, even if it is only writing about tough cookie syndrome.
I’m going to quote a few supportive friends in similar and most likely worse health situations who responded to my freak out yesterday.
One day at a time. One hour at a time. That’s what I’ve learned in the 8 years mine has been going on. I ride the waves and never expect anything, then I’m never disappointed.
It’s not easy but you have to try not to worry about things that are out of your control (work and to some extent, your health). Worrying only causes the vicious cycle to get worse… ! I realise it’s easy advice to give but it’s much harder to action – good luck with it, and I hope you feel better soon.
It does. It took me quite a while to really get into a healthy groove but I can’t lie, I had to grieve for what I’d lost in terms of my vitality, but I adapted and life became a whole lot easier and I started living well.
I don’t think you ever adjust. It’s a matter of deciding on small victories for each day and trying to get through them. Some days you win, some days you lose. Eventually something normal appears on the horizon, but I’m not sure whether that’s because it becomes normal or because you improve… !
The common thread on all those statements is getting over tough cookie syndrome. Eventually those people came to grips with their new normal. They mightn’t like it much, but they have evolved into a new sense of who they are. “I can’t lie, I had to grieve for what I’d lost” is a phrase above I stared at for a long time. I haven’t reached the grieving stage yet, I’m still trying to tough it out. I know this. I’ll bet I’m not the only one.
Mysterious pains appear out of nowhere for no apparent reason. A couple of weeks ago I woke up with an excruciating pain in my left calf. Why? I have no idea. On the third day it miraculously disappeared. It wasn’t the first time, so the doctor ordered an ultrasound. I couldn’t get an imaging appointment for a week (all fully booked), so by the time I had the ultrasound, there was no evidence of the pain from a week ago. Curve balls.
I’ve tested positive for something that I can’t read on the handwritten pathology request. Upper normal is 85 and I’m 143 but this is a low positive (a real positive is about 800) and it is most likely a false positive caused by one of the drugs I’m on. So I have to go off the drug for two weeks and have the test again. Rare test, takes weeks to get a result. Going off the drug means I feel nauseous and dizzy quite often – or maybe that’s the virus. But I stick with the “off” because I need an accurate result. But I’ve got tough cookie syndrome so I don’t make any performance allowances for having a drug stopped. I expect, I strive, to be “normal”. I LOOK normal, why can’t I BE normal?
I tell myself, “You can do this” then I am so disappointed when I realise I was unrealistic (again) and end up back at the doctor and then arrive home in tears of frustration amid feelings of uselessness, being a burden, less than a whole person, lacking.
My darling oldest daughter assures me there is always a spare room for me at her place if the worst comes to the worst. I feel grateful but terrified at the same time – I don’t want to be a burden, I’m a tough cookie, I’ll manage. Yet at the same time I worry about my financial future, constantly I worry about it, it is like a cloud that never lifts. The “why” question never goes away either. Did I do something to trigger this? Is it due to the major stressful events on my life, starting with being orphaned at fifteen (1970), moving countries (1974), getting divorced, fighting the government during 2010 and 2011 – all major stressors. Could I have prevented this? Yes, crying over spilt milk is about as productive and useful as chasing rainbows, but the brain wants answers! Root cause analysis is a tool of my profession, I want to be able to apply it to myself. Are these conditions triggered by food processing technology? Food additives? Smoking? Gut bacteria or lack thereof? STOP THINKING ABOUT IT! Thinking takes energy and I have little enough of that as it is.
Some weeks are good, I feel almost normal. Then it is like my conditions conspire to remind me THEY are in control, not me, not even my doctors. I want to be in control. This is MY body, how dare these damn conditions take over.
I can understand why some patients turn to alternative therapies in the hope those therapies may succeed or succeed faster than traditional medicine. I read an article the other day by oncologist Ranjana Srivastava, What do doctors say to ‘alternative therapists’ when a patient dies? Nothing. We never talk. Ranjana appeared on SBS Insight episode Saving Health aired on February 25, 2015. As a patient of several medical health professionals I found that program VERY interesting and discuss the program in an article on the Australian Independent Media Network, eHealth and the silo culture of medicine. I know I’ll stick to traditional medicine: no, medicine isn’t an exact science and I don’t expect a magic pill to turn back time. Logically, anyway: emotionally is an entirely different story. I do WANT a magic pill that will give me my life back.
Do we feel sorry for ourselves? I can’t speak for all of the patients in similar situations to myself, but no, I don’t think I feel sorry for myself. I feel angry, frustrated, guilty, useless, incompetent, tired: a whole range of emotions that I am sure tax my emotional reserves, the same reserves I realistically need to cope with the situation at hand. No magic pill for that either.
I am sure, like my fellow patients quoted above, in time I will reach a place of acceptance. I will grieve my lost wellness and I’ll adapt. How long will that take? I don’t know. The medications and dosages will be refined and I will improve: I know I am too impatient, I expect too much too soon.
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I wrote the above to get it out of my system. Writing is therapy for me. I wasn’t sure if I’d ever hit the publish button or not. Sometimes I hope my writing may help others going through similar health challenges, then at other times I feel I am just whinging and should just suck it up and be quiet (tough cookie syndrome).
Then my daughter sent me a link to The Spoon Theory on www.ButYouDontLookSick.com. The author, Christine Miserandino, has Lupus. In some respects her condition is similar to what I have. It is a very accurate description of what it is like from a practical perspective. Great reading for anyone with a condition requiring lifestyle modification or a friend or family member so affected. I keep borrowing spoons from the next day. I have to stop borrowing spoons because the deficit isn’t recoverable.
* * * * * * * * *
To my own doctors: I promise to try my best to take more notice of the practical advice you give me about rest and exercise. When you tell me to take three days rest, I will do it – OK, I lied – I will TRY to do it! When you tell me to not give up yet, I will listen. When you ask me to have yet another trillion tests, I will comply. I am very grateful for all your support and your medical knowledge, skills and excellent patient care.
To my work colleagues: I am sorry I am not up to par at the moment and that you are all often carrying my load for me. I know I MUST stop feeling guilty about this because it is not in my best interests to do so. I will try. Thank you all for your continued support and understanding.
Ah Robyn, absolutely know where you are coming from, although its only basically old age rheumatics, dodgy hips, wondering whether those ‘new hips & their components’ are triggering a mild case of ‘flu’ like symptoms or is it just my imagination because I visited my family the other day & they also had some of the symptoms I was complaining of. Kids go to school, pick up other peoples bugs & bring them home don’t they? You know how it goes, but what do I have to complain about now that my 2 hips are working the way they used to.
Yes, I think there are many of us who suffer or have suffered from the “Tough Cookie Syndrome”. Its something that you acquire when you reach an age where you start accepting responsibility, you know, the work vs home/life situation. The kids come along & you ‘have to soldier on’ when you feel like crap don’t you, see, that’s part of the Tough Cookie Syndrome too.
Its not easy taking Drs advice to rest when you know that your sick leave is as exhausted as you are. The stress levels go up because you begin to worry about money again. Its a merry go round of life isn’t it.
I wish that there was a magic wand that could be waved to make us feel better, but there isn’t, so we soldier on and use the Tough Cookie Syndrome to push us along.
I just thank God that I am now retired & on the full pension – oh wait a minute – isn’t that something that I should now be worrying about now? Oh no, will I be able to pay the rent if they reduce the pension in the future, will I be able to afford the good fresh food that I now buy to enable this tired old body to keep as healthy as I can. Will I be able to afford to run the little car my daughter gifted to me, I mean, registration, insurance & petrol are most likely to go up.
Here I was thinking I was pretty stress free – damn it all. So I’ll just have to resort back to just trying to live day by day, only worrying about things when I remember that they are beginning to get too much out of control.
I love your work Robyn, just hope that you get a better balance of whats ailing you everyday. Smile :-)))
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Thanks Sandra – always a risk of “over sharing” but then there are more and more of us with these conditions these days, some of us quite young. Many rheumatoid arthritis patients are diagnosed in their early twenties. It isn’t just those of us of fine wine vintage.
Yes, the financial worries are major for many. I was telling Miss O 1 the other day some people in Australia are reduced to eating cat food. She was horrified and asked wouldn’t it poison them. I pointed out it doesn’t poison cats, so unlikely to poison humans, although I’m not sure it is terribly palatable.
Yes Robyn, my sons wife has had rheumatoid arthritis diagnosed when she was about 14 I think. She has managed it well, is now on a monthly infusion treatment which seems to be holding her, not giving too many side effects. She does, however, need to really keep all of the things as you discussed at bay like if any of us get a sniffle we stay away. She still works, teaches jewelery making, creates the most lovely jewelery herself & looks after their 2 boys & my son wonderfully. She seems to be able to manage stress pretty well, so I think this helps with her health. I’m blessed to have her as my DIL.
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I’m going to be very wary of sniffles from now on! Went Down like a lead balloon when Mufan brought this home from school.
I have a co-worker who is having her first child and she told me when she first got RA she couldn’t even hold a tooth brush. Yet here she is having a baby now. Once under control, many of these auto-immune conditions are manageable, but getting the final diagnosis and establish a treatment regime initially is not quick. That is the bit I find challenging!
You will only become a burden if I have to start wiping your butt 🙂 I will hire you a nurse for that….NOT in my job description! ❤
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If that ever happens, take me to the vet!!! The green needle will be sounding good at that point!
ROFL 🙂 I am glad you see it my way :p Until then…you will never be a burden.
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