Who are we, as people with ME? Are we “patients”? Are we defined by the disease and its impact on our lives? Which comes first: me or ME? This is a question of identity, and how language can bestow or limit it.
Identity is on my mind in the wake of the House of Representatives’ passage of the American Health Care Act. (Here’s a summary of why this bill is so bad for people with disabilities.) Under current US law, insurers cannot refuse coverage if you have a pre-existing condition, and they can’t jack up your premiums for it either.
But under the bill passed last week, more than 130 million non-elderly Americans with pre-existing conditions will lose the protections they have today. Within hours of the vote, Twitter and Facebook were flooded by posts with the hashtag: #IAmAPreexistingCondition. Even celebrities chimed in.
The hashtag is powerful, because it attempts to put faces to all the health problems that we have. Denying health care for pre-existing conditions is denying health care to people. But I will not say: “I am the pre-existing conditions of ME, POTS, and thyroid disease.” I have those conditions, but my health problems are not my identity.
We have to be careful and precise in choosing language. Why? Because changing one word can change the meaning of a sentence, or a protest. I am have a pre-existing condition means I am a person with a complex identity. I am whole and complete, and my disease has not reduced me to just my need for health care. We are not a list of medical words.
We’re all prone to make mistakes with language at times, including ME allies. In describing people with ME, Llewellyn King recently wrote:
They are living a life that is a nearly intolerable to themselves and a massive burden to their loved ones, spouses, parents and caregivers. . . [ME] is vicious and debilitating, leaving the patient confined to a marginal life, a parallel and unequal existence.
I reject this description. I understand that King was trying to convey the devastating suffering of people with ME to a non-ME audience. But that quote makes me nauseous. My life is not a massive burden to my family, and my life is not marginal.
I have ME, and I am disabled. These facts do not make me less of a person. I can’t do all the things a healthy person can, but that does not make me a burden. I can’t participate in life the way I used to, but that doesn’t make my life less worth living.
Describing people as burdens, as marginal, as a list of conditions – this is ableism. Intentional or not, this language communicates that our illnesses make us less than. It reduces our identities to the diseases we have, rather than the people we are. And it tells us that a life with a disease or injury is not as valuable and worthy as a life unaffected by disease or injury. It’s reminiscent of the controversy over the film Me Before You, which romanticized the main character’s choice to kill himself because he is quadriplegic, despite his admission that he could still have a good life.
The intersection of disease and identity shifted with The Denver Principles. These principles, created by a group of AIDS activists in 1983, changed health care and how people with diseases perceive themselves. The Principles begin with a declaration:
We condemn attempts to label us as “victims,” a term that implies defeat, and we are only occasionally “patients,” a term which implies passivity, helplessness, and dependence upon the care of others. We are “People with AIDS.”
That declaration is true for everyone with a disease. We are people with a disease or a pre-existing condition or a disability. Terri Wilder taught me this when she said:
I’m not a patient 24/7 days a week. I’m a sister, friend, and daughter. I’m a person first and should be referred to as such. Using person first language is respectful and acknowledges that while ME is a part of my identity I’m not an illness and am only occasionally a patient in a medical provider’s office.
So let’s stop saying “I Am A Pre-existing Condition.” Let’s reject descriptions of ourselves that reinforce the stereotype that we are burdens, that we are marginal, that we don’t matter, that we are not people.
Because I am a person. I am a person with ME, and I deserve the same respect and consideration as everyone else. ME is a part of me, but it is not my identity. Me comes before ME.
And I am a novelist (albeit a very slow one). On top of being wife, mother, daughter, physicist.
EVERYONE in the world has problems and burdens. It’s called Life.
I agree with you: we are people, first, with all the rights and responsibilities, most of us adults who do the best we can.
Why couldn’t they have picked #IHAVE a preexisting condition – instead of I AM? A tiny bit of better ad copy – with a huge negative tail which will persist.
There has been an alternate hashtag circulating, at least on Facebook: I am a person with a pre-existing condition. That is much better, of course.
Hi Jennie,
Sorry I’ve not been around very much, it wasn’t me it was M.E.
I think this is probably your most powerful blog to date (if I may be so bold).
Well done.
Russ
Thank you, Russ. Your comment makes the PEM I incurred writing this post more than worth it.
Hi Jennie,
Thanks very much for your post. It’s excellent!
Yonks ago we watched a TV program with a hospital scene. One of the medical staff said something like “The left leg in room 201.” A person, reduced to just being a left leg!
We all like labels. It seems to be something humans like to do. We see it as helping to understand our world. As short hand for how things really are. It tidies someone up in a nice little convenient package that we can revere, dismiss, or whatever. The problem is, labels are often too short, a short hand. Partly why the label “Chronic Fatigue Syndrome” is so bad, is because it shortens even further the short hand labelling, and dismissal of millions of people. CFS is a libellous/slanderous term. It’s still OK in power circles, and almost everywhere else, to use this libellous and slanderous word against millions. It’s hate speech.
In a similar vein, I cringe when I read statements of, I have lost (xx) years of my life to ME. I have not LOST those years. Yes, my life has been changed. Yes, in many, many ways it has been severely limited. But in other ways my life has been rich and fulfilling. I am not *just* my illness.
I understand your perspective, and Terri’s, but I have a different take on it. For years we were not acknowledged as people sick with ME, we were thought of as people making up an illness. So I see the term “ME patient” as a legitimizing term, as in, we are really sick, with a real illness/disease; we are just as real as other patients, such as those with cancer, etc.
I absolutely, completely agree with everything that Rivka said!
Furthermore, I appreciate what Llewellyn King said. I find what he said self-evident and comforting because it makes me feel seen. I didn’t interpret what he said or make the same kind of judgments about what he said as you did at all. It is also self-evident to me that I am a victim; one who expects some kind of restitution! Being a patient, being marginalized, being a burden; to myself and to others, as well as being a victim, have nothing to do with my value as a human being; to me, you’re the one making those judgments. I’m perplexed that you as a lawyer seem to have such subjective responses to these words as making someone less than. For me, someone who is a patient, someone who is marginalized, someone who is a burden, someone who is a victim, etc. evokes compassion and care.
We are all different kinds of people and it’s important to be seen that way. We are each multifaceted. Jennie, I agree with some of what you and Terri are saying but not all of it. I think that this is a very slippery slope and that we are all going to have different opinions based on who we each are, how sick we are, what kind of resources we have, time, as well as identity, control and meaning making; which I would hate to see turn into dogma making.
I’ve been sick for 34 years this month. I’m a disabled, severe, bedridden, M.E. patient, who suffers 24/7, who can barely do anything and who is losing most of my life because THE GOVERNMENT WON’T FUND MY DISEASE AND IS MURDERING ME BY NEGLECT AND MISREPRESENTATION which is the problem that I think that we should all be focusing on. I’m just as valuable as anyone else. What I care most about is surviving; everything else is secondary!
P.S. I also find it ironic that people with a neurological disease; some of us severely affected now have this added burden that you and Terri are prescribing – isn’t that a kind of ableism?!
Laurie, I agree that our opinions will differ based on who we are, the duration and severity of illness, the resources we have, etc. Every individual is different, and our identities should be self-defined first and foremost. If you choose different words than I do, that’s totally cool with me. I’ve been disabled by ME for almost 23 years. That’s a long time to integrate my disease into my identity. I felt very different about it even five years ago, and certainly different than 15 years ago. I am fortunate that I am not bedridden now, and so I imagine that I might feel differently if I were in those circumstances again. I also completely agree that we are worthy of compassion and care, as is everyone regardless of health status or other characteristics.
I see this from the point of view of a person with the disease, and the caregiver of a person with a different disease. My husband had a stroke in 2015, and he is still disabled. His disability has strained our finances and circumstances. We carry a heavy burden. But HE is not the burden. His LIFE (which he could have lost) is not the burden. And that is the difference. There’s a difference between saying my life is marginal, and saying my life has been marginalized. Change one or two words in a sentence, and it changes the meaning.
I will never say, “Laurie, you are a burden.” But I will say, “Laurie, you and I are burdened by a disease.” Those two sentences mean completely different things to me.
Jennie said: I will never say, “Laurie, you are a burden.” But I will say, “Laurie, you and I are burdened by a disease.” Those two sentences mean completely different things to me.
Jennie, I understand what you are saying here. Those two sentences mean completely different things to me too. What I am saying is that I have a different response to the word burden (and the other words you didn’t like) than you do and therefore I have no problem with “Laurie, you are a burden.” Someone may say, if they thought it about me, “Laurie, you are a joy.” Certainly, I can be many things. What I’m saying is that I’m not making the same judgment about the word burden that you are. From this discussion, I realize that you wouldn’t like it if I were to say, “Jennie, you are a burden.” I won’t say that out of respect to you.
But other people may want to discuss being a burden and I don’t want to close the door on that. If I wanted to discuss being a burden with someone, and they “corrected” my language and told me that I wasn’t a burden and that it was my disease that was the burden, I’d feel invalidated and unseen and as though someone made my experience taboo, whereas, to discuss being a burden can be cathartic and compassion inducing and potentially problem solving and who knows what else. But it has to be allowed to happen in the first place. In saying that I am a burden, I am not saying that I have less value or that I don’t deserve care or love or whatever. I am just saying that I am a burden and I find nothing wrong with being able to say that. I have also taken care of other people too and different people need different things and I just want to leave the door open to that.
Thank you for this, Laurie. I think I understand your point better now.
We do seem to have different reactions to these words, and I wonder if part of that is context. If you said to me, “I am a burden,” and we were talking one on one about it, I would not shut that down and I definitely wouldn’t correct you. Our feelings are our feelings, and we need to talk about them! If my husband told me he was a burden, we would talk about it together. In fact, in personal interactions, correcting someone’s language can be horribly or even dangerously invalidating. We agree on this.
But in the public space, meaning activism and policy advocacy, I feel differently. To say, “These people are burdens because they have ME” is ableist. It denigrates us (and that can be unintentional; I certainly don’t think King means to insult us). I am trying to stop saying “ME patients” in the public sphere because I want policy makers to remember we are people! Just like them! There are some great stories from the AIDS movement in which activists got policymakers to think beyond the status as patient to the reality of being a person. And we are still fighting the stereotype of people with ME as a group of white middle class women who focus on victimhood and medically unexplained symptoms. It will take conscious effort to change their minds.
Many rape survivors prefer that term to “rape victims” for self-empowerment reasons. Words like victim and burden do have negative connotations. Assigning those words to all of us, as a group, in the public sphere is not appropriate. But feeling like a burden, etc isn’t wrong; it’s a feeling. And I agree with you that as individuals, we need space to discuss how we feel.
This is always an interesting topic to me. There are things in my life that I have, and there are things in my life that I am. What makes one thing a “have” and one thing an “am”? I think my answer is how much it goes to my core identity. I *am* a man; I *am* gay; I *am* an Aspie. That last is especially amusing, because most non-autistics want to define it as a “have”, but most autistics will define it as an “am”. It is an inseparable part of who I am, and I wouldn’t want it to be any other way. I like who my autism makes me. I no more want to be cured of that than I want to be cured of being gay.
On the flip side, I might be said to *have* a cold. It’s something temporary, something I don’t want, the symptoms are treatable (even if not completely) and it will go away with time. It is not part of my identity when I have a cold.
ME/CFS is a different ball game. It’s something permanent, there are no treatments for it that have ever done anything for me, but at the same time, it’s not something I want, and is only reluctantly part of my identity. But it is a part of it, whether I like it or not. Almost everything in my life revolves around it because it forces it to be that way. The only time I ever feel well is in my dreams.
So is it something I have? Or something I am? For me, I’d have to say it’s in between. There’s just no easy answer on this one.
I’m really glad you made this point, Robert. There is a growing movement among disability and health activists to reject the idea that our disabilities are automatically bad or not part of who we are. The #DisabledandCute is a great example of that, as is the choice to use the terms “neurotypical” and “neurodivergent.”
There’s no doubt that ME has changed me, and some of those changes are for the better. I think the longer we are sick, the more integrated the disease becomes into our identity. But as you rightly point out, it’s not something we want. I guess I think about it as more complicated than a zero sum game. I am not my disease; my disease is part of me. So I am not a pre-existing condition, I am not a burden, and my life is not marginal. But my life has been deeply affected by my disease, and I have been forced to accommodate that impact. Of course, that impact is also the argument for why we need more research funding so that we can treat and cure the disease.
Good post, Jennie! Thank you!
Sabrina
Yes, I agree. My comment the other day was, some people are left handed, others use their right hand, I have ME/CFS. Challenges associated with that illness have not always been there, but now present for 31 years it is part of my life. Instead of thinking of losses and poorer than expected performance, I would rather ask my self what was it that I was going to try to do today with the skills and energy I do have available. The sadder part of the message, to my self always comes when a conversation is going on, and I wonder to my self if I sound as messed up to whoever it is that I am speaking with as I do to my self as my words get jumbled and sometimes not very well formed or pronounced. It could be worse, what about those individuals who are healthy and spend their lives and liars, manipulators, cheaters, and then run for president, or make terrible choices for the chance to rub shoulders with him. I may only bring my unique set of gifts and skills to society’s table but I would love to see the cancer of our nation cut out and deposited into hazardous waste bin.
You write very well, Jennie, describing the complexity of illness & identity. Thanks for your illuminating post! ME impacts hugely, for sure, and I think to an extent we do become other selves but still remain ‘me’, if that makes sense. Of course, the age we get ill is also significant, I was not yet nineteen, so my career potential was totally stamped on. The illness was a catastrophe that punched into my life, and I can’t know who – or, more specifically, what – I would have been had ME not hit. But I like to the think the essence of me is still there. And of course I am not just a pwME, I have many other ‘roles’, including being a writer – the least prolific novelist on earth! – but it still gives me pride to know I pulled off my novel, in spite of it all. Wishing you the best, NASIM
Thank you, Nasim! It’s so nice to hear from you. I agree that the age we get sick makes a big difference. I got sick at 26, and that is probably a completely different experience from those who got sick at 16 or 12. Age of onset, degree of disability, and duration of illness will all have an impact on the individual’s perception of ME vs me.
Yes, context is important. So is intent, how people live their lives, what they do for others and room for freedom of expression.
I don’t have the brain power to say all of the things that are inside of me that I’d love to say – it’s soooooooooo FRUSTRATING, but I’d like to add this before the comments close.
I usually don’t watch movies but “You Before Me” was slow enough for me to follow and free on Amazon Prime so I watched it. I saw it as a movie about the right to choose assisted suicide. I saw the writer(s?) as wanting to emphasize that point so strongly that she/he/they chose a character who didn’t have a terminal disease, who had plenty of resources, support, luxury and love, yet still chose to end his life because he has the right to make that choice for himself. Furthermore, even though those closest to him didn’t want him to make that choice, they loved him and respected him enough to support him and be with him in the end. While I found the movie too quirky, shallow and flawed to recommend it as a movie, I do respect the point that I saw it as trying to make, which is a point that I also fully support. I believe in the right to have autonomy over your own body, whether it be in terms of pro-choice or end of life decisions.