When it comes to long-term conditions, or debilitating illness we all want to do our best to make sure that the individual is conformable and to make things as easy for them as possible. But is that always the right thing? Is that what they want?
Before I go any further, this post is a mixture of two things, it will give a quick introduction to what MS is but it will also talk about long-term/debilitating illnesses in a general term with regards to my thought compared to what I’ve seen. So the first section will be educational however, the second will be based on individual opinions and situation and NOT FACT.
What is Multiple Sclerosis?
MS is a condition that affects all of its sufferers differently. For some it can be a mild, slow progressing illness, where as for others it can progress rapidly and leave them basically immobile. MS affects the central nervous system (the brain and spinal cord) with its most common systems for many diagnosed being fatigue, difficulty walking, vision problems, muscle stiffness & spasms and unusual sensation throughout their skin (pins and needs/numbness etc.)
It is commonly diagnosed in individuals in their 20’s to 40’s and studies show that it affects three times as many Women as it does Men, with around 100,000 on estimate diagnosed in the UK. Currently, there is no cure for MS however, several different forms of treatment are available which all depend upon the individuals severity and the rate of progression. Short courses or steroid medications can be used to help speed up recovery of relapses, as well as other medications called disease-modifying therapies to help reduce the number of relapses that can occur.
Through my life and my current employment I have seen several people with long-term and debilitating illnesses, all of which are of course individual/personal in themselves. However, you always want to ensure that the individual is as comfortable as possible and things are as easy as possible for them. But when we think about that now, in a general sense we think about things like are they comfy in their bed, is their home wheelchair accessible, getting stair lifts and specialist showers. Then of course we think a bit deeper like feeding tubes and how to deal with excretion etc. All with the mind-set of making things easy for them and comfortable with them. But that’s not all that needs to be considered. That could be seen as a selfish perspective.
Let me give you this example – a completely paralyzed woman in her mid-twenties, she is either bed-bound or has a wheelchair and needs full-time care. Okay so we think about how do we get her to the toilet? No you don’t that would cause too much hassle for her, so you get some form of drainage system going. All fine and well. But did you consider that this may now mean that she can no longer have sex? If we decided to have this going through her lady-parts she would no longer be able to have sex – which could cause the individual to feel ‘less normal’ as she would not even have the choice to have it. Therefore an alternative system would need to be used which may be less comfortable but it is what the individual wants.
Here’s another strange one, periods. It would seem logical to ‘us’ to put these people on some form of long-term contraceptive or operation to remove the situation, but again it could be seen as taking away a feeling of being a woman and being ‘normal’ (as much as I hate that word) and if they do decide to have children that choice may have been taken away from them.
It’s things like this that I know myself, I’m not sure about other people, that I’d never thought of before. As much as you want to help and make things simple sometimes you can actually be limiting the persons choices in life and making them feel un-human/not normal (again hate phrases like this).
There is something to think about. I would love to hear people views on the issues I have raised and see if it is just me that hadn’t thought of this before. I would also like to apologize if I have offended anyone with my terms and phrases, I did not mean to cause any upset.
If you want more information on MS, please follow the links below. Thanks for reading.
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