When You Feel Like You Can't Help
“I’m sorry, I’ve done everything I can” were the words of a teary-eyed neurologist as he explained to me that, despite him trying everything he could think of, my disease was still progressing. He was one of my early neurologists and while he clearly cared for his patients, he simply didn’t have all the knowledge he needed to fight this disease.
Certain help can only go so far
That happens, not all doctors are equal, and MS is a disease for which what we know and how we treat it are constantly evolving at a very fast pace. It’s difficult to both treat patients and keep up with the latest information, no matter how hard you try or how much you care. I moved on from him after that and eventually found a specialist who was able to help me.
Recently, I started to think more about that interaction; he clearly cared about me, but there were limits to what he could do. As I thought about that, I started to realize that his experience was not unique, it’s actually quite common. Not only with doctors, but with caregivers, family, friends, and more.
Being on the other side
I’m in a unique situation when it comes to MS. While I have the disease myself, I also lived and helped care for my grandfather with MS, so I’ve been both the patient and the caregiver and it’s an interesting perspective. In addition to that, writing about MS has also put me in a unique spot, in that I get to interact with a lot of people with MS (as well as their friends, family, caregivers, and assorted loved ones). When I write and share something about MS, I feel a certain responsibility comes with that. I feel a duty to do my best to engage with anyone who wishes to, whether it be by commenting on the article, or social media, or even via private message. I really do see most of what I write as the beginning of a conversation, it’s me saying, “hey, this is what it’s like for me, what about you?”
I also have limits
I don’t see myself as a writer or blogger or expert or anything like that. I’m just someone who has MS, just like you. Because of that, I sometimes feel like that doctor once did. The longer I’ve been doing this, the more folks tend to comment or message me. I do everything I can to get back to everyone individually, but I inevitably fail and that really truly pains me. In addition to that, while I’ve been around this disease my whole life, and do spend a lot of time keeping up-to-date, I still often end up with a lot of questions that I simply can’t answer. I also hear a lot of stories where I just want to be able to help so much, but there is nothing I can do. That’s a feeling that I think a lot of our friends, family, loved ones, caregivers, and doctors experience a lot. It’s one of the many ways that MS takes its toll on those around us.
You can’t always help
There’s a quote by the fictional Captain Picard of Star Trek (I’m not a hardcore Trek guy, more of a Star Wars, Marvel, DC fella but I know a little): “It is possible to commit no errors and still lose. That is not a weakness. That is Life.”
I feel like that is such an important message when it comes to chronic illness (and I’ve written a similar sentiment with different inspiration about the patient side of things in the past). Sometimes you can’t help people, no matter how much you care or how much you desperately want to. Maybe there is nothing that can be done or maybe, like the doctor I mentioned earlier, you’re simply not the one able to provide them with what they need. It’s so very frustrating and saddening when you find yourself unable to help others. I occasionally break down and get upset with myself, thinking, “Why can’t I do more?” When I think back, I know I have had people that cared for me have the exact same experience and say the same thing.
But in a way, you can
As my thought process comes full circle, I realize that many people in my life have probably had that sentiment. Wishing they could do more. Cursing themselves for not being able to fix me. I have these same thoughts for others and it’s maddening. As I step back into the patient’s shoes, I want to say something to all of those who felt that way with me, including that doctor. This goes for all the friends, family, loved ones, and caregivers who get so upset because they feel they can’t do enough. You did help me, more than you can ever know. You did your best, whether it feels that way or not, you did, and for that, I am so very thankful. Just being there, listening, caring, that’s what’s important. This is, after all, an incurable disease.
There reaches a point where only so much can be done. It’s OK to admit that you can’t always help. Perhaps the greatest thing that doctor ever did for me was to be honest with me that he’d reached his limits. I think that can go for everyone. While his honesty allowed me to seek solutions elsewhere, that kind of honesty in loved ones or caregivers is just as valuable. If they burn out, who do we have? They care for us, but we also care about them and want what’s best for them. They care and that is the greatest thing anyone can do. Knowing that others care about you is the single greatest weapon in this war on MS, for me anyway. That’s what keeps me, and many of us, going.
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
How often do you use assistive devices to help manage your MS?