A lot has changed since I was diagnosed with multiple sclerosis (MS) nearly 25 years ago. A recent birthday (lucky 59!) had me thinking about just what has changed in that time and what hasn’t.
It led to a list of what I was going to call “Things We Don’t Hear Anymore.” Then I realized that while surely the newly diagnosed cohort will likely not be told these things in a medical setting, some of us will still hear them from those close to us and from the wider public.
So, I have changed the name of my list to things we shouldn’t have to hear. And here they are:
1. ‘I Am So Sorry, There’s Nothing We Can Do for You’
It may seem like disease-modifying therapies (DMTs) for MS have been around for so long that everyone living with the disease today will have had access to them since the beginning. But as more than a handful of our readers can attest, that’s not the case.
When I was diagnosed in 2001, the third MS medication had just been approved, and it wasn’t a handful of years before that that steroids were the only treatment available.
But today, there are numerous DMTs for people with relapsing forms of MS, as well as one for people with primary progressive MS — and more on the way.
2. ‘You Should Stop Working’
Medical and mental health professionals alike now realize that we all work for something beyond a paycheck. The social interaction of the workplace, the sense of worth afforded, and keeping an active routine and lifestyle are important life factors we should hold on to for as long as practicable.
Giving up employment simply because we have this disease is no longer part of the prescription upon diagnosis.
3. ‘Exercise Will Make Your MS Worse’
In fact, the opposite is true. Many forms of physical exercise are now recommended by most MS health professionals. Some, like high-intensity interval training (HIIT), are even showing signs they can help not only maintain but perhaps also improve physical and cognitive abilities.
4. ‘Avoid Stress’
Ha! That’s like when the dentist tells you not to put your tongue in a particular place in your mouth while they are working there. Zip! That’s where your tongue goes.
When a medical doctor tells me not to stress, I feel my blood pressure rise, my heart rate increase, my pupils dilate, and my whole sympathetic nervous system go into overdrive.
While we might be counseled to mind our stress levels, most doctors realize they’re just adding to the list of things about which we might stress.
5. ‘No, Pain Is Not an MS Symptom’
This might be the one some people still hear from their docs, but one which we should all be ready to respond to with research-based evidence that it’s simply not true.
Pain and pain reactions are part of living with MS for many of us. Be it a direct symptom such as neuropathic pain, or musculoskeletal pain that is a by-product of how we are walking, standing, or sitting due to our MS, pain is part of living with MS, and we shouldn’t let anyone tell us differently.
And here’s a bonus:
6. ‘Don’t Have Children’
It’s thankfully been a while — but not all that long — that women with MS would have been advised against having babies due to the stress on the body and then the physical demands of raising a child.
There may be some extra precautions having to do with going off treatment to let drugs “wash out” of the system before conception, and there may be a rebound of symptoms after birth, but it’s the rare case today when a woman would be told that she shouldn’t have children (or more children) because of this disease.
No Doubt There Are More Phrases We Shouldn’t Hear
This isn’t an exhaustive list, but I think these are things that people newly diagnosed with MS as well as those who have had it for the long haul should 100 percent not put up with hearing from medical professionals, their family, or the nosy neighbor down the block.
Wishing you and your family the best of health.
Cheers,
Trevis
