Diabetes regardless of type, is practically for most of the time is an invisible disease. For someone who does not have diabetes, they cannot form an emotional connection to it, in the way they can with other diseases, for example cancer, motor neurone or multiple sclerosis. The savage nature of these diseases are all at times too visible, and they tug on the emotional heart strings of all they come in contact with. The disease is visible, people can relate to it. With diabetes, it is almost the opposite. When someone looks at you, they don’t see the diabetes, they see someone who looks well, not sick. When you look in the mirror, you see you, there is little or no trace to be seen of diabetes. So it is practically impossible for someone who does not have diabetes, to understand what someone with diabetes has to deal with, but yet there is an expectation amongst people with diabetes that they almost should.
In a way it almost seems strange to call diabetes an ‘illness’ or ‘disease’ because for most of the time, people with diabetes feel perfectly fine and can go about their day without little or no interruption. Or can they?
Living with an Invisible ‘Disease’
Because diabetes overall is becoming better controlled and studies show that complications worldwide are lessening, it is becoming harder for people to see the effects of uncontrolled diabetes, and/or the daily challenges faced by those who live with it. While the campaign to be seen that you can live a ‘normal’ life with diabetes is admirable, in a way for those with diabetes it feels like you are living with a hypocritical devil on your shoulder. There is nothing ‘normal’ about having to inject yourself multiple times a day, pick for your fingers or count carbohydrates. For most of the time you cannot be spontaneous, everything takes planning and food in a way becomes an enemy, rather than a friend. There is so many invisible layers to having diabetes and the emotional and psychological burden that it implicates, but yet it remains unseen and almost unheard to many around you. This can be a very lonely place to be.
Gaining ‘sympathy’ from family, friends or colleagues for something that they rarely see can be difficult. It can be difficult for them to understand how you feel when your blood sugar levels are too high or too low and for them to put an emotional investment into the something that they can’t see and doesn’t really bother them. That may seem selfish, but unfortunately that is human nature.
The reality is that no one will ever understand your diabetes in the way only another diabetic can.
Health care professionals can be despised by many people with diabetes. In a way, my title as a ‘nurse’ has been both a blessing and a curse. For some people with diabetes, they look at me as someone they can trust to guide them on the right path, to support them to take care of their diabetes more effectively. For others, they view me with contempt, usually from afar. They see me as ‘just another diabetes nurse’, ‘just another diabetes service’, ‘what would she know’ ‘how could she possibly understand’, ‘what can she possibly give me that I am not already getting from my existing services’. I am judged, stereotyped and seen in contempt because of my profession, by many people with diabetes, in the same way a non-diabetic may view many people who have diabetes as being fat, lazy and bringing it on themselves because of lifestyle. See where I am going with this?! If you are annoyed by the stereotypes that you are judged by every day, so am I.
The contradiction I live with, is that after 15 years of dealing with every type of diabetes, at every age and stage, I see what is coming down the tracks for many. I see the possibility of complications within an invisible disease that maybe many can’t see or more than likely don’t want to see. I see people living with diabetes, making decisions and choices that put the hairs on the back of my neck stand and I am powerless to do anything about it. Because of my experience and studies I have been given a sort of a ‘crystal ball’ that can see what lies ahead in those with diabetes. All complications from diabetes are avoidable and preventable. My ‘crystal ball’ can see potential risks of complications, which I neither wish nor want for anyone living with diabetes.
My role is to inform people, not judge them, influence them or convince them. I have to respect peoples decisions, no matter how much they conflict with my own, and treat them with the same level of respect and non-judgement that they deserve. I only wish that I sometimes was afforded the same opportunity. Many people who cross my path in my service think they are going to be scolded, given out to or reprimanded. If I wanted to do that I would have become a prison officer not a nurse.
Sometimes I want to shake people, scream at them to make them hear, because I am so worried about them, and I am passionate about making them live their life to the maximum. I want them to see the risks, feel my fear for them. But I can’t. I am often asked for advice or my opinion, which realistically is not wise, because I do tend to be brutally honest and I might not give people the answer they want to hear.
So here lies my difficulty, I have to ask people with diabetes to put an investment into their health and diabetes management to ward off potential complications that they cannot see. I am asking them to put faith and trust in my experience and knowledge that might not necessarily sit well with them right now. Its a big ask isn’t it?
So isn’t it ironic that in a way, I suffer the same frustration and anger that people with diabetes experience when they are not understood, judged or ignored, because non-diabetics cannot ‘see’ their diabetes? How can we get people to understand something that they cannot see, feel or touch?
Different Sides, Common Ground
Nearly all of the time while there might always be a difference of opinion between health care professionals and people with diabetes, there is a common ground. You want to live your life to the best of your ability’s with diabetes, and I want that for you so much also. To cross that bridge between being the person living with an invisible disease and the person who is holding the crystal ball for it, takes time, commitment, a lot of listening and a hell of a lot of understanding, from both sides.
Unfortunately as a ‘nurse’ I cannot be your best friend, I can’t always give you the answers you want to hear. But one thing I can guarantee you at Diabetes Insight. No matter how you feel, I NEVER close our door. You might only attend once, or twice, ring to inquire and never commit at all.
But Diabetes insight is are always here, will always listen and the welcome is always there, regardless of circumstance and free from judgement. That is our promise to you.