You Can Do Everything Right and Still Be Sick
Whether it’s you or someone close to you, when someone has been diagnosed with an incurable illness like multiple sclerosis, there is an immediate need to know why and how they’ve acquired this disease, or why they aren’t cured yet or don’t feel better. Hand in hand with those questions is a common sentiment: the desire to assign blame. Whether it’s something you’ve done or a wrong committed by someone else, looking for an explanation is something that many folks will spend countless hours on. The problem with being concerned about finding someone to blame is this: when it comes to MS, you can do everything right, and still be sick.
Searching for a cause or something to blame
Looking for something to blame seems like human nature, doesn’t it? Every effect has a cause, right? Surely if there is a cause, there must be some way to avoid it. That’s the thing with MS though; we don’t know the cause. There are ideas out there, but no one can definitively say what makes some people get this disease and some people not. Unlike, for example, smoking and lung cancer, we don’t have some clear thing to point to and say, “Oh, I did X and so Y happened”. There are no warnings anywhere on what to avoid in order to not get multiple sclerosis.
The frustration of having no outlet for our anger
That’s really frustrating for most people. Even if it’d be blaming ourselves, we have a need to have a place to put that blame. It’s somehow easier to deal with a situation if you know why it happened, and if you’re assigning blame, then you’re pretty sure you know why you are where you are. When you assign blame, you’re able to rationalize a situation where you aren’t sick and you can romanticize about what might have been. That’s not all though. Placing the blame on someone (or something) gives us a place to direct our anger. That’s important because getting an illness like this (and the utter havoc it can wreak in your life) can create a tremendous amount of anger in someone.
We try to direct our anger other places
Having that anger with no place to assign it can make the search for someone to blame extend way past the cause of the illness. OK, I have MS, but why isn’t there a cure yet? Must be “big pharma”, yeah, it’s their fault! Sure, there may be issues there, but scientists are most certainly looking for a cure. If I had been diagnosed sooner, I’d have started a disease-modifying drug sooner and be less disabled now. Those early doctors I saw, they must have been incompetent! This is common, but not every doctor is as competent as we’d like and it’s not their fault - MS is a really hard disease to diagnose. I could go on and on with examples, but people look for places to assign blame, they look somewhere to focus their anger. They do this because having a disease like MS sucks, and it’s not fair. It can ruin, or at the very least, dramatically change people’s lives. That creates negative emotions that we have to do something with.
It’s no one’s fault
Even once you have the disease, if you’re seeing your doctors, taking a disease-modifying med, and doing all of the common things your MS team suggests, you may still relapse, you may still become disabled. That’s frustrating, too. It’s hard to have MS. Medications can be unpleasant, and so can going to all of the various doctors' appointments, as can trying to eat right and take care of yourself. At times, all of those things suck as much as the disease, so it’s like extra punishment having to do everything. That’s why it’s extra frustrating if you do all that and still don’t feel well.
My experience with Avonex and blaming myself
I used to take Avonex right after getting diagnosed, a deep, painful intramuscular injection that would give me flu-like symptoms for 24-hours. I took this for a bit and eventually still had exacerbations. I convinced myself I must be doing it wrong, injecting it incorrectly. I even had a nurse come out and watch me multiple times. It wasn’t me though, the medication simply stopped working for me. My body adapted to it, and it wasn’t what I needed. But it wasn’t my fault, I did everything correctly.
We were all doing everything we could
My doctor was correct, too. In my situation, that was the medication that was most commonly prescribed. He honestly gave me the best care he knew how to give. I know now, had I started on something like Tysabri way back then, I’d be much better off. It’s hard not to get angry at that, not to want to blame my previous doctors. But that medication didn’t exist then, and even if it had, common practice would still have said to not prescribe it yet. It’s no one’s fault that Avonex stopped working for me, everyone involved, myself included, did everything they should have in that day and age.
“It’s just war” - some things are out of your control
Sometimes, there’s simply nothing different you could have done. There is an amazing scene in the movie Black Hawk Down that I always think of when this subject comes up. In it, Josh Hartnett’s character is pretty down and blaming himself for the situation they’re in, and Eric Bana’s more veteran character pulls him aside and reminds him that he did all he could, that he did his best. He says, “You did all you could...it ain’t up to you, it’s just war...would have, could have, should have, it don’t matter” and that you can’t control everything that happens. He basically reminds him that it’s not his fault and that he did everything right, but some things are just out of his control and he needs to focus on the rest of the mission.
Focusing our energy on the mission at hand
That scene always makes me think of my life with MS (especially given how many of us love to adopt the idea that we’re “MS Warriors”, after all, we’re at war with a disease). It’s a reminder that I’ve done everything I can and it’s not my fault I got sick, and it’s not my fault that I’m still sick. Sometimes, there’s no one left to blame, and we need to find other ways of dealing with our emotions. It’s important to leave the could have, should have, would have and all the blame so we can focus on the mission at hand, surviving this disease.
I have the hardest time with my MS during the following season: