Yesterday, a good friend whom I admire and respect left a link for me on my Facebook timeline. The text that he wrote to accompany the link was “Inspiration of the day.” What followed was a link to an article about a woman who, 3 years after her MS diagnosis, has chosen not to take any MS medication and instead to run a marathon every day for an entire year, finishing the year with a double marathon.
Now, I know this friend pretty well, so I am entirely certain that he had good intentions and was looking to lift me up when he sent me this article. I am not upset with him, and I deeply appreciate that he holds me in his heart and wants to remind me that I am capable of more than I think I am.
That being said, something that people who don’t have a chronic disease often don’t understand is that when you send links about people who have your disease doing incredible (sometimes ridiculous) things, it is not inspirational. It is a form of shaming. It suggests that the disease you deal with on a daily basis really isn’t that bad, and that anyone with that disease ought to be able to do the crazy-ass thing that this person, who has your disease, has chosen to do.
Diagnosed with MS? Climb Mt. Everest!
I remember when I was initially diagnosed with MS, Teva Pharmaceuticals sent me an information packet, asking me to be a part of Team Copaxone – a bunch of folks with RRMS who do things like climb Mt. Everest, lead a team to the South Pole, participate in the Para-Olympics, and so on… (from the Teva Pharmaceuticals website) “Team COPAXONE® is a group of individuals with RRMS who have different talents and aspirations, yet one common objective: to live the lives they have imagined despite their disease.”
I remember thinking, “I’m finishing law school and am going to take the bar exam despite the fatigue and cognitive problems caused by RRMS. I’m kind of like the folks in Team Copaxone! I won’t let anything stand in my way!”
And I did complete law school. I even took the 3-day CA bar exam twice. I didn’t pass either time, though I was close — and I blame the fact that I didn’t pass on the constant seizures I was experiencing at the time. (It’s hard to pass a test when you have seizures that cause you to fall out of the chair you’re in and bang your head on the desk while you’re taking it.) These seizures were caused by MS. So no matter how much I wanted “to live the life I imagined despite my disease,” I couldn’t. That doesn’t mean that I didn’t give it everything I had.
It’s not that you’re inferior. They’re just so superior.
When folks with MS get media attention for do amazing things, like training for the Kona Ironman competition, modifying bicycles so they can pedal with their hands and participate in 2-day long bicycle races, continuing to pursue a lifelong dream of being a basketball player with the NBA, have a booming career as the mascot for an NFL team despite heat intolerance, or be a Major League Baseball player, people who are not knowledgeable about the disease think that the rest of us ought to be able to do these things.
To make it worse, you’ve even got fictional characters, like President Josiah Bartlet of the West Wing, messing with the understanding of the disease for your average person.
The bad logic isn’t hard to follow: If there are people who have MS that can succeed as professional athletes or political figures, people with MS really aren’t that disabled. They’re just holding themselves back.
While I wish that were the case, it simply isn’t.
This is what MS does to you.
Multiple sclerosis is different for every person that has it, for many of us, the symptoms are severely disabling.
The most common symptoms of MS (courtesy of WebMD):
“Abnormal sensations: People with MS often say they feel a “pins and needles” sensation. They may also have numbness, itching, burning, stabbing, or tearing pains. About half of people with MS have these uncomfortable symptoms. Fortunately, they can be managed or treated.
Bladder problems: About 8 in 10 people have bladder problems, which can be treated. You may need to pee often, urgently, need to go at night, or have trouble emptying your bladder fully. Bowel problems, especially constipation, are also common.
Difficulty walking: MS can cause muscle weakness or spasms, which make it harder to walk. Balance problems, numb feet, and fatigue can also make walking difficult.
Dizziness: It’s common to feel dizzy or lightheaded. You usually won’t have vertigo, or the feeling that the room is spinning.
Fatigue: About 8 in 10 people feel very tired. It often comes on in the afternoon and causes weak muscles, slowed thinking, or sleepiness. It’s usually not related to the amount of work you do. Some people with MS say they can feel tired even after a good night’s sleep.
Muscle spasms: They usually affect the leg muscles. For about 40% of people they are an early symptom of MS. In progressive MS, muscle spasms affect about 6 in 10 people. You might feel mild stiffness or strong, painful muscle spasms.
Sexual difficulties: These include vaginal dryness in women and erection problems in men. Both men and women may be less responsive to touch, have a lower sex drive, or have trouble reaching orgasm.
Speech problems: Sometimes MS can cause people to pause a long time in between words and have slurred or nasal speech. Some people also develop swallowing problems in more advanced stages of MS.
Thinking problems: About half of people with MS have trouble concentrating that comes and goes. For most, this means slowed thinking, poor attention, or fuzzy memory. Rarely, people can have severe problems that make it hard to do daily tasks. MS usually does not change your intellect and ability to read and understand conversation.
Tremors: About half of people with MS have tremors. They can be minor shakes or make it hard to manage everyday activities.
Vision problems: Problems with your eyes tend to be one of the first symptoms. They usually affect only one eye and go away on their own. Your sight may be blurry, gray, or have a dark spot in the center. You may suddenly have eye pain and temporary vision loss.
Very rarely, people with MS may have breathing problems or seizures.”
There is no cure yet for Multiple Sclerosis.
The only thing that upsets me more than being presented with evidence that MS doesn’t stop you from doing amazing physical things (for many of us, it does!), is when people send me links talking about people who have “cured” their MS.
None of them have.
Dr. Wahls, for example, has done an amazing job of regaining ability in her body that she had previously lost due to MS, by eating a modified paleo diet. News sources around the world touted her discoveries as a “cure” for MS — but Dr. Wahls will tell you herself that she still has the disease, and that she is managing the symptoms through diet. She still deals with some symptoms from MS, but she’s much better than she was prior to starting her diet regime.
Then there’s CCSVI (which was proven ineffective), stem-cell recipients, bone marrow transplants, and recently, T-cell reprogramming.
Not one of these “cures” is a real cure, but, they are steps towards one.
Why do I get upset when people excitedly tell me about “cures?” Because every one of those articles about potential medical therapies carries with it a mixture of false hope and more shaming. These articles contain the implied suggestion, “If the news says this is a cure, you should try it – and if you don’t, then you’re not doing everything you can to fight the disease.”
I’m proud of how I’m doing.
I have gotten accustomed to a life with seizures, thinking problems, sexual difficulties, muscle spasms, fatigue, dizziness, bladder problems, and abnormal sensations — all occurring during the last 6 years while I’ve been taking medicine to slow progression of the disease.
So, no – I don’t think I’m going to be running 366 marathons anytime soon. I sure as shit am not climbing Mt. Everest, and I have no designs on trying to become a professional athlete or political figurehead. I’m facing the challenges presented to me by my body and am not looking to increase the difficulty of my life.
The fact that, since the constant seizures abated in January, I have consistently gotten myself to the gym 3-4 days a week proves to me that I am not a quitter.
The fact that, for 6 years, despite being initially needle-phobic, I gave myself nightly injections to fight the disease, lets me know that I’m willing to face my fears and do whatever is necessary to maintain as good a level of health as I can.
The fact that I am, once again, following a modified paleo diet because science confirms that it makes a positive difference in the health of people with MS, shows me that I am not lazy or letting the disease “win.”
The fact that I’m willing to try new drugs when they come out on the market, like Tecfidera, despite the chance of horrible side effects, lets me know that I have not lost hope.
Despite multiple sclerosis, I do my best to live a full life. And to me, that’s all any of us can ask of ourselves.