In our daily interactions within the continence field we have met many people who have lost their self-esteem and experience a limited social life because of continence issues. Helen, a user with MS, expressed it in a very honest way:
I felt that if I couldn’t deal with my own continence issues I wouldn’t want to live, so it has been a big issue for me. The thought of regressing to a dependent state, as an adult, was too much.
Dignity is often described from an outside perspective; how to treat another person in a respectful way. But people with disabilities or continence issues often have difficulty in treating themselves with respect, kindness and compassion. This places a high demand on healthcare professionals. Jessica Burton, Continence Lead from UK has given this a lot of thought.
– When your body is failing you in certain ways, doing as much as you can yourself gives you dignity. Maybe you can’t walk as you could before… That regression makes you feel like a child – it puts you back. Somebody has to care for you and do things for you. It makes you vulnerable.
Finding a working treatment, to make patients feel comfortable in leaving their house and take part in a social life, is always the priority.
– If you can take charge of your bodily functions with things like self-catheterization or transanal irrigation, at least you have some kind of dignity. You are not completely helpless. You do feel vulnerable and you do feel helpless if you don’t have that control in your hands, Jessica Burton continues.
It is often easier for men than for women to use intermittent catheters, simply because of anatomy. This means that women sometimes need assistance, and in some cases; handing over the task of catheterization to a caregiver or a partner, which in the latter case may affect the relationship.
– Obviously, catheterization is something intimate and if your partner needs to perform it, it doesn’t feel very ‘sexy’. However, using intermittent self-catheterization, rather than a catheter that stays in, makes it possible to retain that feeling of femininity. It is definitely a way forward.
Except for finding the right treatment solutions, there is a big need of being empathetic and cautious when approaching the subject. Joanne Townsend, Bladder and Bowel Nurse Specialist, is educating patients with continence problems.
– Opening a conversation about urological conditions can make people uncomfortable. It is almost like a ‘confession’ that they have a problem. Often, they feel embarrassed when someone else takes a look at their genitalia, and for many people, bladder symptoms are associated with smell.
Bev Collins, Clinical Nurse Lead, emphasizes the importance of building trust, making the patients feel comfortable in sharing their thoughts and issues.
– I try to find a common language following the patient’s use of words. Often it is as simple as building a relationship by talking about other things in life, and if appropriate, using a little humor.
And maybe it is as simple as that. Everyone has a desire to be recognized, understood and accepted. The good thing with dignity is that once you honor other people’s dignity, you strengthen your own.