It’s not a competition

I’m starting to accept that my blog is now going to be a collection of intermittent posts when I have the energy and passion about a subject to discuss it in depth. I finally have one today. This time, I’m feeling pretty touchy about how people treat each other in our society.

Illness, pain, suffering – these are not competitive sports. We treat them like they are, but competition is such a destructive way to treat these subjects. People are always comparing themselves to others, and isolating themselves as the only person who can know what it’s like to suffer in the way that they do.

Isolation and competitive suffering really only lead to bad places. When I developed severe M.E. and there really was no one that I knew who understood me or could have any empathy for me, I felt alone. I felt like I should die. Because that’s what society told me. I got messages from lots of other people about how my situation wasn’t real, I brought it on myself, and if I just didn’t want to be sick anymore, I wouldn’t be. That at least I didn’t have cancer or some other dreadful disease. I was rejected by those around me. Foolishly, I bought into what I was told. I wasn’t ok with myself or my situation until I started to encounter others who have the same illness. Once I realized that this IS real and I’m not just lazy or worthless, well, I was able to find other people who might not be sick like me, but were able to empathize. I wasn’t alone anymore, and just maybe I would be accepted somewhere.

I ran into a situation in the airport this week, and it was enough to make me want to remind people to be careful about what they assume about others. So, I made a PSA on my Facebook page. I expected that people would read the message, take heed or not, and move on with their lives. I didn’t expect to get any comments on the post, and I really didn’t expect people to defend those who judged me. What this tells me is that there is a bigger force than I realized at work here. A societal norm. People close to me think that disrespectful behavior is ok because it’s common. My aim is to change the fact that it’s common and that it’s accepted.

The situation:

I was sitting on a bench by baggage claim, waiting for my husband to grab our checked bags. Due to this very strange symptom in my case of M.E., when I sit upright for long periods of time (such as on a plane or long car trip) my shoulder sort of falls out of the socket. The muscles burn like they’ve been overworked, and I have to have a doctor put my shoulder back in place. I think that the muscles just cannot make or use energy properly, and the weight of my arm is too much for that muscle group. Additionally, because I spent too much time in the polluted indoors of Las Vegas (I truly thought that smoking was not allowed indoors anywhere anymore, but I am clearly mistaken), I had a fibromyalgia flare. Every nerve in my body was on fire. I took that wait time to be by myself, as best you can in a crowded place. I chose to engage myself with messages to my petsitter and from people on Facebook.

Despite my lack of an inviting posture (I buried myself in my phone), and elderly woman tried to make conversation with me. I chose to be polite, because even though I was not well and really didn’t want to interact with anyone, she couldn’t know that. Sure, she was rude to interrupt me, but it’s a minor thing, really. I’m sure she thought I was one of those people who can’t put down the phone. Besides that, sometimes things happen when I’m not in top form to handle them, and I have to deal with them anyway. No reason to punish other people for that.

The elderly woman said to me, “Travel is painful and exhausting.” I smiled weakly and said, “Believe me, I know.” She then spoke to me as a parent speaks to a child, telling me that there was no way that I could know that because I am young. I was put off, because I am sure she saw me as some healthy 20-something who knew nothing of the world, let alone pain and suffering. I am neither healthy nor 20-something (but people tell me all the time that I look like it), and I resented that she would assume something like that by looking at me. I simply smiled and turned back to my phone, disengaging and choosing not to judge her as she did me.

I was prepared to write the encounter off. Some people think that just because they are older, they must know everything. I see often how an adult or elder will speak to a child or younger adult disrespectfully, and when the younger person responds defensively, they wonder why. It’s all about respect – if you want to be respected, be respectful. It works most of the time.

The part that made me want to speak out about it was that in less than 10 minutes time, the same situation happened AGAIN, in a slightly different context. We were in the elevator on the way to the car, when a middle-aged woman with a kid (maybe 8 years old) in tow, made the same comment, that travel is exhausting. I figured that this would be a do-over, a reminder that not everyone is judgmental – but I was wrong! When I gave her the exact same reply as I did to the older woman, this woman looked me up and down and said, “you don’t have children, you couldn’t know.” I disengaged from her as well, because there is no point arguing with someone like that.

I realize from the response on my Facebook page that the reason I take issue with this kind of commentary is not going to be obvious to many, if not most people. I’m going to try to explain it as best I can here, where I have more space.

1. You cannot know a person from a very brief encounter.

The people who engaged me on the subject of pain decided that because I looked a certain way and did not have certain props, there was no way I could know about pain or fatigue. I know without a doubt that had I been using my cane or holding the hand of one of the many children I have traveled with (as an adult equally responsible for their care and well-being, no less), these people would not have judged that I could not have my own struggles. They dismissed the possibility of a hidden illness.

In fact, I found myself being judged by a patient at a patient advocacy seminar I was holding once for what she saw in the moment. She said that I could not understand diabetes and being overweight because I didn’t look overweight at that particular moment. Fortunately, the doctor who was with me in the presentation stood up for me, noting that the patient was seeing me after I had committed to years of treatment, and that I was in fact in that boat not long before (don’t worry, she had my permission to disclose my personal info).

When you judge a person by what you see in front of you right now, you are dismissing volumes of information. What was this person’s life like before this moment? Is this an anomalous situation, or is this the norm for this person? What makes the person in front you tick? Not a one of these questions can be answered in such a brief moment in time.

In the airport situation, I did not presume to know what these other women felt, but they felt free to presume they knew something about me. Just don’t. To quote a friend, “You don’t know my life.” Feel free to speak about your own knowledge and experience, but you cannot know by looking at me or any other person what they have experienced, and what they do or do not know.

2. Pain and suffering are not competitive sports.

This point really bothers me from several different angles. People sometimes tell me about their pain, but quickly follow up with, “but my pain isn’t as bad as yours, so it’s not important” How do you know that? Last I checked, you weren’t in my body. I have a different pain tolerance than you, and pain affects me differently than you. The fact that I’ve had intractable pain for 4 years has no bearing on the fact that you are now in pain as well. If I weren’t in pain, you’d hurt just the same.

The other end of the spectrum is when someone tells me, “Well, at least you can do x. I can’t.” Or there is the ever popular, “You’re too young to know about x.” It seems that some people need to invalidate others in order to validate their own pain. As for the latter statement, illness and pain don’t check your driver’s license before striking.

In all of these cases, it’s comparing the trite apples and oranges. What’s more, invaliding my pain doesn’t lend validity to yours, or vice versa. Everyone’s pain is valid, and everyone’s pain is their own. Age and appearance are completely irrelevant.

3. Isolating yourself isn’t going to improve your situation.

A popular statement I hear from people is that “you are not me and cannot know exactly how I feel.” This is true on a technical level, and it is why I do not presume to know what someone else knows from a brief encounter. I can only speak for myself.

I used to feel that no one can understand me if they aren’t me, end of story. Now, my position is more nuanced. I do not think you should judge another’s choices in regard to how they manage their struggles because you haven’t lived that person’s life and haven’t been faced with their challenges. BUT – this doesn’t mean that you or other people don’t have the experience to empathize and/or offer helpful advice.

For example – everything I do is harder than it should be. Until very recently, I couldn’t read more than a sentence or two at a time without intense concentration. There was no such thing as a good, full night’s sleep. Certain things, like feeding myself, had to be done whether I felt like it or not, and if I didn’t do it, no one else would. I don’t know all the answers for the struggles I encounter, and apparently no one else around me does either, so they can’t help. I am often isolated in my home, my only source of adult, human interaction being Facebook. But you know who else has these experiences? Mothers. Especially single mothers. Maybe they aren’t ill, but they go through similar challenges and have to get through them somehow, just like I do. I’ve made a lot of mom friends who don’t have M.E., but struggle nonetheless. I am not having an unprecedented experience – it may not be identical to anyone else’s, but there are people out there who share some aspects of it. It helps to know these people are on my side. I don’t feel so alone this way.

4. It is disrespectful to dictate to someone else what he or she knows.

This is a rather lengthy point, which is why I saved it for last.

When you tell someone else that they do not know something, it implies you have more authority on the subject than they do. But do you know that? With certainty?

It takes a lot of confidence and knowledge to declare yourself an expert on any subject, but when it is about another person’s life, it takes downright arrogance. When it comes to another person’s life experiences, I promise, no one knows more than the person whose life is in question.

When these women told me about pain and fatigue, they attempted to invalidate my life experiences. To say that I do not understand these subjects is to say that I did not lose a year of my life on the sofa to M.E. It says that I did not pursue treatment after treatment, watching most of them fail, with some having only moderate positive effects at best. It denies the accomplishments I have made in sussing out my allergies and the particular failings in my body. It dismisses the work I’ve done on my own to understand my condition and help others find their own way. It says that I did not consider suicide as a means to end my pain. It says I didn’t even suffer the body wide fire from one of the treatments I tried. It just wipes it all out.

And for what reason?

Because I look young?

Because I don’t look sick?

Because I chose to forgo a prop that would have made my life easier in favor of not attracting unwanted condescension (people talk to you like you have a mental deficiency if you use a chair or cane – I have no idea why)?

No one should have to prove anything to anyone else to be treated respectfully. Yet on a daily basis, we judge, and we punish. We disrespect each other. And when someone finally snaps from that kind of treatment, we blame the victim, failing to find our own faults in the situation.

It’s exhausting to me to act as if I’m not sick, but I do it. I guess I should be flattered when my acting skills fool someone into being unable to consider that I have something else going on behind the scenes, but all I can feel is the judgment. The implication that I am a liar, or perhaps stupid. That’s hardly respectful to imply that to someone else.

I wish it were just me who dealt with this sort of thing, but it isn’t. Not long after I posted my experience, someone spoke to me privately about understanding what it is to feel judged for being “too young” to be in the kind of pain she was in. I can only hope the things I told her helped her feel supported, to know that there is at least one person out there who isn’t judging her.

But if people stopped for one moment to think, to not presume that they know more about the person they are speaking to than that person herself, it would make the world a better place. Please think about this.