Lately I have found myself in a strange place in my career. For some people I encounter, it has become an apparent hindrance to them that I do NOT have diabetes. Yes……you read that right, a hindrance.
For many people my professional experience, qualifications and personal experience of living/caring for someone with type 2 diabetes on a basal/bolus regime is completely irrelevant. The question most people want answered within 5 minutes of meeting me is….’Do you have diabetes yourself?’. I can understand why, to a degree, it is very much human nature to ask a question like that.
Its a question I have always expected to be asked, and never had a problem answering it…….that is until recently. It has become apparent that to some people with diabetes, the fact that I do not have diabetes myself is an obstacle to them attending my practice, coming to talks or even recommending me. I understand and respect everyone’s right to what works for them, the fact they may feel more reassured by attending a professional in a similiar position to theirs is fine for them, but when they prevent other people from accessing what I have proven to be a very beneficial service, then we have a problem.
My Own Experience of Dealing with a Chronic Condition
I have suffered with Irritable Bowel Syndrome all my adult life. I know it is not a chronic illness and by no means am I comparing it with diabetes. Not a day goes by where I don’t experience some kind of cramps, pain and other not so pleasant side effects. Some days it has gotten so bad, I pass out in the bathroom from the pain. I also suffer from allergies, which once caused me to go into anaphylaxis. I carry allergy medication and an adrenaline pen everywhere I go.
I have sat in front of every health care professional imaginable over the last 20 years for my IBS. Never once did it occur to me to ask them ‘Do you suffer from IBS yourself?’. To me it does not matter, once the person in front of me shows empathy, has experience, access to the latest research, treatments and I can learn something new from them that I did not know before that allows me to hit the ground running with my own self care, then whether they have IBS or not is irrelevant.
Impartiality v Experience
In actual fact I would prefer a health professional who did NOT have the same medical condition as me. The last thing I would want is to compare and contrast my experience to theirs. I don’t need to feel anymore inferior and complex than I already am. I want someone who is impartial, who won’t litter a conversation with, ‘well this is how I do it’. Every single person living with IBS is different, as are people with diabetes. I just want the latest information, and what ‘I’ can do to help myself, not what you do, or think I should be doing. What may work for one person, maybe detrimental for another. I want to pick and chose what advice and support I need, but I need to be confident and reassured that it is factually correct and based on the best available evidence. So I tend to ask alot of questions, much may be to the disdain of the doctor sitting in front of me.
If I end up in discussion with a fellow IBS sufferer, I usually take their experiences and research them myself to see is there anything that I could apply to me. I don’t take anyone’s advice, experience or opinion as better than each others, so I tend to encourage the same in my clients. Its whatever works for them, and I am very respectful of that.
The ‘Expert’ Patient
The term ‘expert’ patient has been much touted over recent years. In my opinion there is no such thing as ‘experts’ in anything as being an expert suggests many different things to different people. They say if you read more than 6 books on any given topic, you are then an ‘expert’. I would certainly agree there are ‘experienced’ patients, who I hold in very high esteem and value immensely their opinion, advice and experiences of living with diabetes. I don’t see myself as an ‘expert’ nurse despite my experiences and qualifications, I am always in a position of learning and open to be being taught. I want people to see that side of me always, as being an expert suggests I have nothing further to learn, and that is a very dangerous place for anyone to be.
The Value of Personal Experiences
Others personal experiences is vital when living with a chronic condition, it is good to know you are not alone. But when experience becomes an opinion and advice that might not be welcome, this possibly can become an additional layer of pressure of living up to the expectation of being the ‘perfect patient’.
It is well known that people learn best when listening to those who are in a similiar situation to theirs. I welcome peer to peer support, in actual fact I encourage it. But there is a fine line when knowing that by sharing your own personal experiences you are empowering or dis-empowering to others. You might feel what you have learnt and experienced is vital for others to know, but it must be acknowledged that they maybe in a very different place and space to when you received this information.
A Blended Approach is Key
As no two people with diabetes are the same, in the same way the word ‘diabetes’ is not just a blanket term for all types, approaches in how people self-manage their diabetes is no different. My thesis for my Masters was on different educational approaches in diabetes, and the outcome of my research was no one educational approach out ways the other. A blended approach of all education types suited best, and I think the same can be said for diabetes self-management and support.
So in my opinion, albeit maybe a biased one, is that whether I have diabetes or not, should be irrelevant when I provide support, information and advice to people with diabetes once they find it of benefit to them. Likewise if a client feels that they would benefit in talking to someone living with diabetes, I always put them in contact with Davina Lyons of Diabetes T1 Ireland, who is a wonderful advocate and inspiration to those living with diabetes in Ireland, regardless of type, as well as many other clients of mine have made themselves available to speak to others, and I am so grateful for this. It allows me to provide a very whole, comprehensive service to people with diabetes, and in a way remain impartial, which I feel is very important.
Remaining Respectful & without Judgement
I am always respectful of a persons experience of living with diabetes. To me whether a person has lived 2 months or 20 years with diabetes, regardless of type, they will be treated with the same level of respect, impartiality, transparency and non judgement that they deserve. We are all in a position of learning.
By giving this respect, I would only expect the same in return. On a common ground we can move forward with a persons management, in a safe, trusted environment, regardless of whether I have diabetes or not.