Type 1 Diabetic Journey

Discriminatory Medical One-liners

 

Having encountered many types of ignorance about Type 1 Diabetes from various sectors since my diagnosis in 1992, I thought it would be worthwhile to show some of the adverse comment which I have received regarding my condition. To say the least, I felt their comments were only comparable to the sometime lack of knowledge in our society about the daily suffering that is endured with a permanent long-term disease such as Type 1 Diabetes.

"You have Type 1 Diabetes. I wouldn't touch you with a 10ft pole!"
These were the words of a young medical intern explaining to me that he thought the acute gall bladder attack I was suffering was possibly imaginary (!), and certainly way beyond his experience and capabilities especially with Type 1 Diabetes. I was lying, writhing in pain on a trolley in a hospital casualty department, and in dire need of medical assistance and pain relief. This young intern was busy describing my medical history to his colleagues and showing how I had presented, and it appeared he would never attend to me. Because of the delay my husband stepped forward and asked a nurse to assist. My body was freezing cold so she wrapped me in a hot blanket which felt like pure heaven. A saline drip with Pethidine and Maxolin was administered for several hours, and when the pain subsided I was discharged with Pandeine Forte tablets. Due to nausea, I did not eat for the next two weeks and my blood glucose levels (BGL) raged out of control, even though I kept injecting insulin regularly, see Log book scan Week18-2001, see Log book scan Week18-2001

I had two recurring emergencies, with the same Pethidine and Maxolin treatment, and each time I was discharged I was advised to come back if there was another attack. The next attack was so severe, my husband rang the Ambulance as I could not move off my bed and my blood pressure rose to 189/90 with a resting pulse of 140. I was rushed to hospital and for the next four days I received a saline, insulin infusion drip with a secondary drip for Flagyl, Amoxocillin and Roxithromycin antibiotics, and four-hourly shots of Morphine.

On day 5 I had improved to a stage where a Surgeon was able to perform a Cholyestectomy, and I remained on the insulin infusion drip and antibiotics with four-hourly shots of Pethidine for the next two days. On the next day Day 8, with my bag packed and waiting to be discharged, I was told I had a low white blood cell count on the last test and would be required to have another test before I could leave the hospital. This was done, and I wondered when, and if, I would be able to go home, and fortunately I was later discharged after waiting a few hours.

After my initial gall bladder attack, my GP told me that a gall bladder removal is the most common and straight forward procedure performed in Australia and it only requires an overnight stay in hospital. Mine took seven nights! These medical experiences have certainly taught me that Type 1 Diabetes can cause major complications to any other medical procedure or infection, and in turn, this prolongs the recovery. As I could not eat at all during this month of infection, I lost 7kg in weight. The young intern who made the above statement was among a team of doctors at my bedside the day before my Cholecystectomy and I can only conclude that he may have discovered my condition was not 'imaginary', see Log book scan Week22-2001 see Log book scan  Week23-2001).

"You have to keep it positive"
People in good health have been offering me this kind advice since I was diagnosed with
Type 2, then Type 1 Diabetes in 1992. The advice has paled as I continue with my Herculean effort to keep living and overcome adversity from the constant hypoglycaemic and hyperglycaemic events, infections, sick days and hospitalisations.

A recent diagnosis of Diabetic Neuropathy explained the stabbing, burning pains in my legs at night and my numb feet in the morning which would create difficulty in getting out of bed and walking. I was prescribed Tegretol 200mg for neuropathology pain, but before starting this I spent time working out a possible solution to lower the pain level, which had become unbearable. I began experimenting with gradual increases in my Basal insulin which is Lantus and gradually a very positive outcome was noticed as these disabling symptoms completely disappeared. I now did not need the Tegretol 200mg.

More recently I have had the diagnosis of Angina with extreme chest pain, palpitations and shortness of breath, requiring Glyceryl Trinitrate at each event. As with many of my experiences with Type 1 Diabetes, I have found that positive thought can lead to an improvement of symptoms, but I occasionally find this these an extreme extra challenge to balance along with the Type 1 Diabetes. Having this major illness every day, that is, never having a holiday from the illness, is not an easy challenge to combat. Positive thought has played a major part in my survival through the often presented ravages of Type 1 Diabetes.

"You could go to work for one day a week to pay for your private health insurance to cover the costs of an insulin pump"
This advice was given to me at a Diabetic Clinic while undergoing an Insulin Stabilisation
Scheme with a hope of my being suitable to start insulin pump therapy to improve my diabetic control. Having been unable to work for the previous fourteen years with chronic illnesses due to Type 1 Diabetes, I explained to staff that I was now in receipt of a Full Disability Support Pension, and could not work. I also disclosed that I have a red 'M' (Medical) stamped on my work records with my employer and this information would be passed on to any potential  employer to advise them of my permanent ill-health. Being unable to pay for private health insurance, and miserably failing at the insulin stabilisation attempt, I was rejected from the Scheme.

"What?  Have you been on the grog or something"
This was an interesting question from a family member as we were busily navigating a website together. I became very tired and pallid, and I felt my blood pressure rising with palpitations and shortness of breath. I later found out my blood glucose level (BGL) had dropped to 2.4BGL due to the stress and excitement of my unexpected visitors arriving. The surprise was a little bit too much for my health. My words became slurred, I was saying them back to front, and my speech slowed to the point of this person's misinterpretation.  I was pained by the above comment and I later remembered that behind every 'joke' there is a half-truth, so I must have actually appeared inebriated.

"Pull yourself together woman. I have a friend who got over his Diabetes!"
These were my brother's words of frustration at his inability to give me an evening meal while I was staying a few days at his house. A sudden hypoglycaemic event had come over me and I needed food almost immediately. Being in someone else's home, I did not have my usual pre-prepared meals handy, and neither did my brother, even though he knew of my medical needs. Fortunately I had brought my own protein snack bars with me, and these saved the day, but my bars and options were quickly running out. There is no known medical cure for any of the Diabetic illnesses in the Year 2011.

"You are not trying hard enough to help yourself!"
A member of an Insulin Stabilisation Scheme made this comment to me when I phoned in my daily blood glucose levels, BGL's, so they could determine the amount of insulin for the next day. This mean and abject comment has also come from several other medical professionals who thought that I could be doing more to help myself or redefined, get rid of Diabetes as best you can because your results are over the top!

"I thought you must be dying or something"
These were the words of an interstate friend as my husband ushered her up the stairs and she saw me experiencing a hypoglycaemic attack. It was my lunch-time. Unable to speak, my husband told her he would continue looking after me and get my another lemonade and then a snack before lunch. I drank the lemonade and later gathered myself off the floor to sit on a stool. I was looking at my friend and, possibly out of awkwardness, she started recalling similar episodes which I had previously told her about, and not having ever seen me in this condition before, that was when she made her statement.

After everything I had told her about my serious medical condition, she thought she had better come and see me because she thought I was dying or something. Not liking to disappoint her, I gathered myself as best I could under the circumstances and engaged in conversation as I slowly came out of the hypoglycaemic attack, but felt resentful for being put out to this extent. I have since learned more appropriate management skills from this experience, and I now have no difficulty asking people to leave and catch up later.

"Is that contagious?"
There was an occasion at work when it was necessary for me explain to a parent that I have Type 1 Diabetes and the parent replied, "Is that contagious?" as she took two steps backwards. This action delivered a strong message to me that not only is there little general knowledge on the subject of Diabetes in our community, but also that it could be considered a 'risk' to people by being in the company of a Diabetic.

"You don't seem to be getting any better and you might have to go to a church, or get 'hands-on healing".
This acidic remark from a Thoracic Specialist left me feeling stranded and helpless while attempting a recovery from total voice loss due to vast quantity of inhaled steroids and Prenisolone tablets which were prescribed for Asthma which I developed after the Pneumonia and hospitalisation in 1996. I attended speech therapy lessons for many weeks to overcome my voice loss, but to no avail, and my blood glucose levels escalated way out of control, often reaching 28.5BGL, which is a dangerous level, so I felt no comfort from this suggestion. Steroidal use and insulin are not compatible.

"Your Insulin Dependent Diabetes is rated as nil on table 19 as the condition is controlled by medication".
This stern judgement came from a Government body that deals with prospective recipients  of Government payments including those who are totally disabled and totally and permanently disabled. It was not until I fell into the latter category that I did, after two years of waiting, qualify for Government assistance due to chronic ill-health.  At the time of receiving this letter, I had already been at home on Sick Leave for two years, and was totally incapable of carrying out any work duties. Fortunately for similar sufferers as myself, the system has now changed to acknowledge people with permanent disabilities far earlier than this trauma that I experienced at not receiving Government support early enough. As a consequence, we lived entirely on credit card while waiting for a Payment in those two years. ( see Page One Scan of Centrelink letter dated 23 November 1998 )

“You must be a heroin addict or something?”
This demeaning comment came to me while I was injecting my lunch-time insulin at a ladies' restroom in a shopping centre. Hoping to get the shot over as quickly as possible, because of the constant traffic in the room and not wanting to be in view, I resorted to resting my handbag on a basin, as there were no counters available and all the toilets were occupied. I had turned to face the inside wall and was just putting the syringe and insulin back into its kit when a lady came up to me and made the above statement and indicated that she was going to report me to Centre Management, and she then stormed out of the room. I could have shown her my Diabetic wrist bracelet but she had already gone.

 

 

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