People are generally good and decent and want to help. That's one of the many things I love about America: regardless of your politics or background, most people are simply decent. This is great, but it often becomes a point of frustration for the chronically ill and disabled. People always want to fix you.
This isn't a new phenomenon for me, as I have had an incurable, degenerative disease for at least eight years now. The longer I deal with it, the easier it is for me to get frustrated with people constantly trying to help. As it is often said, it comes from a good place, and that is also good, but eventually, it just gets tiresome. It's easier when it's just yourself to fend for in these situations, but you add a child with a disability into the mix, and it gets downright infuriating sometimes—even though that feeling is unwarranted. Hey, we can't help what we feel, only how we react.
Lately, these feelings of resentment have only been compounded by our current political climate. There shouldn't be anything political about your personal health and that of your children, but here we are.
No One Knows What Causes MS
But everyone has an opinion on how to make you better. Since my official diagnosis, I have had almost every conversation in the book about MS. "What is that?" "What causes it?" "Is it contagious?" (one of my favorites), "Is it genetic?" "Is there a cure?"
So, I will answer those questions for you here and now.
What is it?
Multiple sclerosis is an autoimmune disease affecting an individual's central nervous system, specifically their brain and spine. Your immune system attacks the myelin sheath that protects all the abundant neural pathways in that system, and over time and wear, those signals begin to degrade.
The easiest way to think of it is to envision an insulated electric cable. The copper inside the cable is insulated to protect the copper itself and ensure the smooth flow of electricity. If that insulating sheath around it begins to fray and deteriorate, the wire will short out, and eventually, it will stop conducting electricity altogether.
This is what happens in MS; those neural pathways begin to short out, causing a veritable smorgasbord of problems. It is said that no one's MS is the same, but there are some patterns of disability throughout. These include severe pain, neuropathy, loss of motor function, memory problems, brain fog, temperature intolerance (hot and cold; we are thermostat princesses), bowel and bladder incontinence, and insomnia. And these are just some of the more common effects of the disease.
I have experienced all of these either constantly or inconsistently. No one "dies from MS," but we sure don't live well because of it. The life expectancy of a person with MS is approximately seven years shorter than the average.
There are many great medications that help stop the progression of MS, but none of them can reverse already-incurred disability. Not to mention that all these "disease-modifying therapies" can often have side effects worse than the disease itself, up to and including death. Sorry for bumming you out, but that's life!
What causes it?
Nobody knows, although plenty of people seem to think they do. There are no definitive markers or precursors that will predict how or who will get MS. Most experts believe it is a mixture of environmental and genetic factors but are still unable to pinpoint specifically what those are.
Some correlations include living in the northern hemisphere and being of European descent, even though this can't be observed universally, as all different types of ethnicities contract MS. MS occurs predominantly in women, and there is approximately a 2% risk if you have a parent with MS. That's pretty much it. There are countless theories and correlations, but no specific evidence pointing to one thing.
I think every person living with MS has their own theory on what caused theirs. My theory is that it's environmental. I don't have a single biological relative who has had MS. Ever. Which negates the genetic component. I think my disease was caused by the many toxic exposures I had while serving in the Army. I'm talking burn pits, chemical weapons, and radiation, oh my!
They'll tell you that all of these exposures are within occupational exposure guidelines and there's no way they could have an adverse impact on your health. Those people are either willfully ignorant or liars. There is no way they can measure a systemic impact that accounts for unique exposures over a lifetime. Most of the data is specific to one type of hazard, not the totality of many. I know for certain that your friend's cousin's aunt doesn't know how "her one friend" got MS.
Is it genetic?
Not really. As I said earlier, there is a 2% chance of having MS when you have a parent that also has it. Negligible.
Is it contagious?
Haha, no, Deborah. So you can stop talking to me from six feet away and wipe that scowl off your face. I won't give you the MS! It's mine!
Is there a cure?
This is the hardest one for me to answer. No, there is no cure, only treatment. In my case, the treatment itself hasn't increased my quality of life and is often detrimental to my well-being.
I get an infusion every six months that depletes all of my B-cells. You may recall that I said this was an autoimmune disease, so the logic here is that if you have no B-cells, your body won't attack itself anymore. This actually works... at least I can't prove that it doesn't, as I have had minimal disease progression for several years.
The debate for me is if it improves my overall quality of life, and the jury is still out on that one. I have two small kids in school who are constantly bringing all the nasty bugs home that their fellow nasty kids give them. I just had sinus surgery last year to try and cut down on the number of infections I get, which are numerous. The amount of weeks spent on antibiotics may just outweigh the amount of time off them. I've never done the math.
I say all this again to reinforce the point that there is no cure. The best you can hope for is a dam, and a failing one at that.
MAHAhahahahaha
I love the spirit of this movement. A return to healthy living, eating, and habits. This had so much promise until its actual execution and the complete departure from science and reality. I can't believe that I actually have to type this, but vaccines don't cause autism... the Army does.
Raw milk is not "good for you." Swimming in polluted water is not refreshing nor healthy, and creating distrust in our medical and research institutions is not smart. It is always OK to question the official narrative and be critical of "the data," but riding that pendulum all the way to the other side of insanity isn't really a good answer either.
Why am I talking about MAHA? It's because a lot of the people trying to fix me want to do it with voodoo, essential oils, and hopes and dreams. This is a perfect allegory for health and politics in America. No, I don't want to visit your hedge witch at her cottage by a festering swamp.
The Bottom Line
At this point, you may be rightfully asking yourself what the point is of this mildly aggressive explanation of a disease that affects approximately 1 million people in the United States.
Unless you have MS or are a doctor specializing in MS, stop trying to give me advice. I don't want it, I don't need it, and you don't have the answers.
I made the statement about people being genuinely good right off the bat to say that I know it's meant to be caring and helpful, but here is the crux: Just because you know someone with MS and they had a good experience with X, Y, or Z does not mean that everyone else does. I equate it to the "I can't be racist because I have a Black friend" argument. Just because you know someone, or someone adjacent, doesn't mean that you understand their lived experience.
Does anyone really think I haven't looked at every possible option to feel better or find that mythical cure? I have, and I will place money that the average person will not know more about my disease and how to treat it than I do. Just stop.
It's OK to show sympathy. That's appreciated. Just know that you can't cure me, and you can't make me feel better. I'm sorry, I know it's a bummer, but that's the way it is, and I would wager that most people living with any chronic disease will espouse similar thoughts.
Oh yeah, this also applies to autism. You can't cure my kid either, but thanks for trying! I'll write a post on the 'tism experience later.
So that's it. I know this probably wasn't entertaining, uplifting, or even funny, but sometimes things need to be addressed directly, and if this helps you to understand what not to do in the future, I'll call that a win.
As always, thanks for reading.
Dad out.