Rose Colored Glasses: How Do We View MS?
There was an immediate outcry in the Australian MS community when their patient organization ran a fundraising campaign that shows the very dark side of MS. You all know the picture I am talking about –the crippling, life sucking monster that some with MS live with. They used the rationale that they needed to reach their donors at the lowest emotional point to get them to open their wallets the widest. MS Society of Western Australia said that people respond more if the picture is grimmer than if they see people living successfully with MS. You can read more on this story and the various reactions at Pity Porn or Outrage over saw style charity ad.
The bottom line for this campaign seems to be give money now or people with MS will be trapped and die.
I continue to waffle on how I view the presentation of MS – many people when newly diagnosed immediately jump to the conclusion that they will die from Multiple Sclerosis. Many times over I have said MS won’t kill you – it doesn’t work that way. But I also have to explain that the complications of MS can become life threatening and even life ending. This thinking fits right in there with other confusing & contradictory sounding MS statements such as MS is not inherited but we can be genetically predisposed to having MS.
Technically, MS itself is rarely a killer disease, unless we happen to have brain stem lesions that can interfere with critical autonomic functions such as breathing or our heart beating. That, from what I read, is very rare. What are more common are the complications from MS, especially for people with Primary Progressive MS (PPMS) that can lead to serious illness and death. We all know the importance of activity – especially to keep our muscles strong, working out our lungs, and our circulation going. Picture being in a wheelchair and the effects on the body. - this inactivity increases the odds of pneumonia, which can be a killer. Dysphagia, the condition that makes swallowing difficult, can cause a person to choke and aspirate fluids into the lungs, also setting up the right conditions for pneumonia along with other problems.
Infections are more likely to occur if we are sedentary- this includes UTI’s and pressure sores. The cause of UTI’s can be obvious and if left untreated they can cause sepsis, a life-threatening infection carried in the bloodstream. Pressure sores, often called bed sores, happen when we sit or rest on the same skin contact points over and over, until the skin thins and ruptures. All the germs around us are opportunistic and have no problem invading our body through bed sores. Caregivers have to be especially diligent in skin care and watching for any signs of problems with the skin.
There are other possible complications that aren’t discussed much, such as poor nutrition or depression, both of which can be amplified by the progression of MS. The list might go on but you get the general idea - living with MS in its most aggressive form will erode health.
It used to be that people with MS had a lifespan about 7 years less than the general population, but that has changed. The availability of the disease modifying therapies has slowed MS progression, keeping the majority of us out of wheelchairs and away from the possibility of developing life –threatening conditions. Most of us with MS can now expect to live as long as the next person, but there are still those people who don’t respond to the DMTs or who have PPMS who face the possibility of a shorter life span.
I like wearing the rose-colored glasses to talk with the newly diagnosed and horribly frightened people out there who need reassurance and comforting. But I also know I have to take those glasses off and look at living with MS realistically for so many people who struggle with much more.
So which picture of MS should we share with the newly diagnosed and with the general public? It is possible to live well, despite having multiple sclerosis…. OR MS is a life-shattering diagnosis in many ways, including the possibility of a premature death. The public should know all the different faces – the big question is how do we find that right balance and share the message of MS?
Wishing you well,
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