22 August 2013

How to be an Ally to Sick People

Trigger warning: Quoted examples of ableist, patronizing, condescending, or hurtful speech directed toward sick and disabled people.

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An awesome friend of mine shared this earlier today and gave permission to repost here so many more people could see this and contribute. Ideas derive from direct and indirect input from various sick and disabled folks. (For the record, it's the same awesome friend who gave permission to share "A Guide to Sighted Allyhood.")

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How to be an Ally to Sick People

By "Sick" here, I am talking about people who deal with chronic illnesses like fibromyalgia, lupus, arthritis, multiple chemical sensitivity syndrome, chronic fatigue syndrome, and other physical conditions that are not always immediately noticeable. Some people with more apparent disabilities (like wheelchair users) may also be dealing with similar symptoms, as part of their disability, that are less apparent. (For example people with muscular atrophy, spinal cord injury, etc. might also be dealing with fatigue, chronic pain, etc.)

This is just my opinion, one person's perspective, though I have run it by some other people too. Please don't take this as the gospel though. I welcome additions from anyone who is Sick or Disabled in an often unapparent way.

In each section, I start with the DON'Ts to help highlight the DOs.

1. Being the Judge. The Judge says: "You were able to do that yesterday." "But you went on a hike with me once." "You don't look like you're in pain though."

Do not make yourself the judge of a person's level of pain, fatigue, etc. Everyone has good days, bad days, in-between days, and you don't know what price they pay to do the things they do. Maybe they went on that hike and spent a week in bed after because they really wanted to enjoy nature and decided it was worth it. This person's care team monitors their health much more closely than you can as a bystander. This person's (chosen) family has seen how their illness affects them much more intimately than you have. Leave it to their support team, and realize that a smile and vibrant look for 2 hours at a party doesn't mean that person isn't sighing or in tears when they go home. If you are not very close to this person, there might be a whole other side you never see. They might not feel like being on public display, and making themselves vulnerable.

An Ally says: "I'm sorry you're hurting so much more today." "I feel honored that you accepted the health risk just to spend time with me in nature." "Wow, you have impressive coping skills for hiding pain."

An Ally recognizes that they do not have the same experience as a Sick person--they do not understand the natural ups and downs and fluctuations. An Ally understands that often when a Sick person comes off as more abled than they are, it's out of a conscious choice to pass, or in other words, juggle perception and reality. An Ally recognizes someone's skills in passing as abled for survival, while only being a source of support when the Sick person lets the pain show, can't hide the fatigue anymore, and respects the person when they choose to be vulnerable and emotional.

2. Being the Doctor. The Doctor says: "You should eat less sweets." "You should stop drinking." "Have you tried acupuncture? Exercise? Raw food diet?" Etc.

This person has dealt with their symptoms far longer than you have. They know what options are best for their body and what options aren't. Their health is their personal business. They will ask you for advice if they want it. They also know when they have to make choices for their emotional health. Maybe some ice cream helps them deal with the shitty reality of being in sick. Maybe a beer helps reduce their pain, or makes it easier to deal with symptoms mentally. Respect that they are coping with the situation in the best way they know how, now, and with the support that they do/don't have. Try to be a source of support. Keep in mind that whatever you have to suggest that they didn't ask for, they have probably already heard it nine million times before.

An Ally says: "I'm so glad you're engaging in self-care." "You deserve a break from the pain/fatigue/nausea/etc." "Would you like some suggestions? [in response to a "yes"] This is what has worked for me/someone I know."

An Ally recognizes each body and mind is different. An Ally recognizes the mental, spiritual, and emotional needs that also need to be factored into living with chronic illness. An Ally aids in finding ways a Sick person can get some kind of relief (even if temporary or partial) from their symptoms. An Ally recognizes that medications, therapies, and remedies that may have worked for them or someone they know may not necessarily work for everyone. An Ally gives advice only when asked.

3. Being the Parent. "Are you sure you can take that many classes?" "Are you sure you can do that job?" "Should you really be staying out this late?"

This person can make their own choices and figure out their own plans. They have figured out ways to do what they wanted in the past, and can figure it out for the future too. They already know better than you the price they will pay for their choices now. Don't take it upon yourself to parent them if that is not something they have indicated they want. If they ask, that's another story, but don't impose that role onto yourself (and the role of the helpless child onto them). No matter how well-intentioned you are, when the help is not requested, it's patronizing.

An Ally says: "I support you in pursuing your dreams." "I know you can do it." "You can crash at my place if you need to."

An Ally realizes that abled people do not always make the wisest choice for their bodies because sometimes they want to have social lives or have fun. Sick people are no different. An Ally recognizes that a Sick person has the same right to fun and community. An Ally is willing to take steps to help the Sick person live an enriching life and trusts Sick People will go through their own process of figuring out how much or how little they can take on career- and hobby-wise.

4. Being the Martyr. "I always have to give you rides everywhere!" "Why do I always have to do the house chores?" "What would you do without me?"

Caregiving is great when it is just that--giving. Giving with conditions in mind, with guilt-tripping, with threats of withholding the support if the Sick person doesn't do a) b) c) is not true caregiving. At best it's not nice, and at worst it's abusive. It is wielding privilege over the other person and creating an unbalanced power dynamic.

An Ally says: "I'll give you a ride"--without making themselves into the Savior for doing so. An Ally cherishes and values the ways in which a Sick person can contribute to a relationship, even if those ways are less tangible. An Ally recognizes that chores and practical every day living stuff is only one way of giving in a relationship and that a Sick person may have to find other ways to give back (such as through art, emotional support, expressing appreciation). An Ally recognizes that there is a power dynamic and that privilege needs to be carried with care and conscience. An Ally also respects their own boundaries and limits with giving so that resentment does not build up in the relationship.

5. Being the Complainer. The Complainer says: "It's exhausting hanging out with you." "You're always canceling plans last-minute." "I can't do this."

Being in a caregiver role, or even just being a friend or acquaintance of a Sick person can be a lot to handle. Sometimes it seems like tough stuff and maybe more than you can handle. However remember that while this is hard for you, it's even harder for the Sick person. Imagine what it's like to be in their place.

An Ally says: "I love hanging out with XYZ but it can be exhausting"--to someone else they trust, not the Sick person. An Ally lets other abled people who are able to be emotionally supportive know: "XYZ may or may not show up to the party tonight"--without judgment. An Ally says "I can't do this alone"--to a person who is dealing with less hardship than themselves and seeks support OUTSIDE the relationship with the Sick person. An Ally reaches out to other people to vent and debrief about the hardship of being friends with a Sick person or in a caregiving role.

6. Being the Worshipper. The Worshipper says: "You are such an inspiration!" "Wow, if I were you, I would just kill myself." "You must have a special relationship with God/[insert spiritual figure here]."

A Sick Person does not exist to make you feel warm and fuzzy inside. Your sense of gratitude for your own health and circumstance should not be hinged upon their suffering. There is no correlation between being Sick and any sort of spiritual or religious status. Sick people, liked abled people, run the gamut in terms of religious and spiritual beliefs (or lack thereof). It is important not to view a Sick person's existence in terms of your own, or to impose shallow stereotypes onto Sick people.

An Ally says: "Sometimes you stay strong, and sometimes you crumble, because you're human." An Ally says: "I respect your feelings about life and death."

An Ally takes a Sick person's words about faith/spirituality/lack thereof at face value. An Ally gives a Sick person the space to be an individual, and realizes we all individuals yet all interconnected. A Sick person might teach you something, but you might teach them something. And yet, even if you have strong impacts on each other and learn from each other, your life purpose is not reduced to their education. You each live for your own sake first.

7. Being the Over-Empathizer. The Over-Empathizer says: "Oh I know what you feel like--I hate when I get the 24-hour flu." "Oh yeah, I'm tired after a long day too!" "I pulled a back muscle once."

Yes, we have all suffered to some extent. We've all dealt with some degree of sickness or injury. But it is important to remember that being temporarily sick, or in temporary pain, is not the same time as chronic illness or chronic pain. The intent to be compassionate is recognized, but it's important not to diminish a Sick person's experience. It's important to recognize abled privilege. If on the vast majority of days you aren't tired, aren't in pain, etc. then you do not understand being Sick.

An Ally says: "I can't imagine what it is like to feel nauseous every day." "I have no idea what it feels like to be tired by 11 AM." "You're right, I don't know what it's like."

An Ally recognizes their abled privilege. An Ally is compassionate but recognizes they do not fully understand. An Ally uses their experiences and draws parallels to try to get an idea, but recognizes that temporary pain/injury/discomfort is only a small taste of what Sick people go through. An Ally recognizes that pain/symptoms/sickness is a Sick person's baseline, their every day.

8. The Victim-Blamer. The Victim-Blamer says: "Why don't you stop focusing on it so much?" "Maybe you were evil in a past life and are dealing with this to fulfill karma." "Maybe if you listened to my advice you'd feel better."

Different Sick people cope in different ways. Some Sick people find that thinking and talking about it helps. Some Sick people find that it doesn't. Sometimes shitty things happen to perfectly good people, and this is no exception. The underlying reason to victim-blaming is often some attempt at denying privilege or absolving guilt. Realize that the Sick person did not choose illness and you did not choose abledness. It's not their fault they're Sick (even if they made poor health choices at one point, so did a lot of people who never became Sick). And because you didn't choose to be abled, there's nothing to feel guilty about. Feeling guilty helps no one; if you recognize your privilege and feel stuck, think of ways you can use that privilege to practice allyship.

An Ally says: "If you need someone to vent to, I'm here." "I don't need to insert my opinion into every discussion about chronic illness." "It doesn't matter what made you sick, how can I best be supportive now?"

An Ally recognizes that Sick people are human and sometimes get overwhelmed by their situation. An Ally recognizes that at times a Sick person may want to vent among other people who understand first-hand what it's like. An Ally also recognizes that we all make mistakes or poor choices and that is a part of being human. An Ally recognizes for example that one person could text and drive and nothing happens, and the next could text and drive and get permanent brain damage. Even if an illness is connected to a poor choice, it still doesn't mean the Sick person deserves the illness.

Other comments that come from a place of privilege:

"Your outfit looks so tacky." Part of being Sick is that often when it comes to getting dressed, comfort comes first. If the only pants you can bear to have touch your skin today are the blue pineapple shorts, then that's what it's going to be. Note: many Sick/Disabled professionals wear the necessary attire and look forward to ripping it off and putting on PJs the second they get home.

"You can't be an activist sitting at home on your couch. If you really care, you'll come to this protest/ rally/ march." Many Sick/Disabled activists have no other choice. Online activism is just as valid as in-person activism. Activism is about ideas and changing the way we think--it's not about how many hours you spent under the burning sun/ in the cold wind.

"Your apartment is a mess." Doing chores takes energy that many Sick people don't have. It's not the same as laziness. Laziness is "I could do it if I wanted to, but don't feel like it." Being sick is literally being so drained of energy you wouldn't be able to do it even if you wanted to.

Sick folks, feel free to add! This is a live document--a work in progress--I look forward to having other perspectives added. If you need to see this in ASL or another format, let me know. Contributions in other formats are welcome (if you want to talk about it in PM and have me rephrase, or sign your thoughts to me in TASL, I welcome them.)

Added later!

9. Being the Ablesplainer. The Ablesplainer* says: "She was just trying to be nice." "But that's not how I meant it!" "You're too focused on how you feel."

Sick/Disabled people already know how that abled person meant it. We already know that they were just trying to be nice, or kind. Good intentions, good-heart, we get it. We spend our time thinking about "what they meant by that comment" or "their thinking behind that act" all the time. We are forced to think critically about the abled perspective because most people in our life who interact with us interact with us from that perspective.

An Ally says: "That was a dismissive comment to make." "I'm sorry you are frustrated." "That person didn't think about the impact their actions would have on you."

An Ally puts impact before intent. An Ally recognizes that even though someone means well, their words, thoughts, and actions can still have a harmful impact on Sick people. An Ally centers the Sick person's feelings in a discussion about their chronic illness and caregiving. If a Sick person vents about patronizing behavior, an Ally listens to the Sick person and values their feelings. An Ally doesn't make excuses for another abled person's behaviors.

*Ablesplainer (also ablesplanation): the act of an abled person trying to explain Disabled people's experiences to them. It comes from combining the terms abled and 'splaining, constructed parallel to terms like whitesplaining and mansplaining.

10. Being the Newscaster. The Newscaster says: "Oh, they had to get this test done and has that diagnosis and their doctor said this and that." The Newscaster answers all questions about a Sick person's health on the Sick person's behalf without express consent or discernment.

When some is Sick, particularly when they have to go to the hospital or get some kind of treatment, it's natural for people to be concerned. People want to know this Sick person is doing okay. They want to understand what's wrong and offer help in whatever way possible. The Newscaster is usually acting on this intent, but does not realize that they are not respecting the Sick person's boundaries. They also do not realize that they could be causing a lot of drama for the Sick person, particularly if they share sensitive medical information to people who could make harmful judgments based on this information (for example, an employer deciding to lay off an employee after finding out they're likely to be out for awhile.) 

An Ally says: "They had this test done"--after the Sick person has given express permission to share this medical information. An Ally says: "He doesn't want to go into detail, but suffice it to say he is doing better." An Ally asks the Sick person how much to share, and who can know what information.

An Ally respects the Sick person's boundaries. An Ally respects the Sick person's choices in how much to disclose about their illness and to whom. An Ally prioritizes the Sick person's privacy over others' curiosity. An Ally understands the risk in sharing medical information and treats this information with the respect and care it deserves.

17 comments:

  1. This is great, thanks!

    One thing i would personally add in the #5 part is talking with the sick and/or disabled person and getting consent around talking with / getting support from others about our stuff. E.g. giving a sweetie consent to go ahead and share a,b,c, but not d about their health, etc, so they can get support around it and at the same time respect your boundaries around disclosure etc.

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  2. I have (insert laundry list here) chronic illnesses, sometimes life-threatening but always life-limiting. I am 25 and I live in a nursing home. I do all my own self care, but medically, I just am not safe on my own. I hear ALL THE TIME "but so-and-so meant well and you have to take it how they meant it." I want to, and I try to, and I even try really, really hard to take it "how they meant it," but when someone says some of this stuff... ugh. I get frustrated and want to explain to them how it makes me feel. The most recent example is from a new nurse that I saw the last couple of days who was being extremely patronizing. I brought it up to the charge nurse and she said, "Honey, you have to understand that that's how people are being nice." Now, the charge nurse is also very patronizing, so I was fighting a losing battle, but I felt like she was doing the whole, "You just have to let people treat you like you're five years old" thing or whatever. It's not right. Why do I just have to deal with it, day in, and day out? "You're too focused on how you feel"-- um, my pain level is approximately 43 on a scale of one to ten right now. Next time you feel like someone is doing surgery on you with no anesthesia, I'll be sure to tell you to stop thinking about it and change the topic. On the one hand, I get it, because my pain level and nausea level and whatever else are sky-high so often that at some point, I have to move on... but on the other hand, it feels crappy to be told to ignore being THAT uncomfortable, like they don't believe I really feel that bad.

    I could go on forever on this. I guess I'm venting. But I also don't know how to handle people making light of things that really aren't light.

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    1. very true and applicable for so many IWDs. MS patients are among the laundry list of chronic illnesses

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  3. Excellent. This is so true.

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  4. Thank you for posting this. I've been dealing with Lupus and Fibromyalgia for 6 years now, and the amount of people who say things without thinking is staggering. I try not to complain too much or talk about it all the time, but sometimes I just want to stand up and scream at everyone. You know, on the days I can actually stand...

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  5. Thanks for posting this. As an able-bodied person I'm sure I have unknowingly fallen into saying all of the above at one time or other. Sometimes it is very difficult to know what to say and what not to say, while understanding that the right thing to say for one person is not the right approach for someone else.

    As you say, Lydia, even though I and other able-bodied people may mean things in a nice way (and I'm sure that most of the time we do) it doesn't stop those comments being hurtful or thoughtless or patronising. Hopefully this guide will stop us making these kind of mistakes!

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  6. Thank you for posting this. As an able-bodied person it's often difficult to know what to say and how to say it without unintentionally being hurtful or patronising. I'm sure I have done all of the wrong things listed above in an attempt to say the right thing.

    As you rightly point out, Lydia, just because I and other people with able bodies "mean well" doesn't mean that the things we say aren't hurtful. Hopefully advice like this will help us avoid that in the future.

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  7. The whole "but I meant well" dialogue values the thoughts, feelings, and experiences of abled-bodied people over Sick/Disabled people.

    Why is the abled person's intent always more important than the impact it had on the Sick/Disabled person?

    Because we live in a society that values abled lives and feelings over Disabled lives and feelings.

    As Disabled people we spend all day every day trying to put ourselves in the heads of abled people. Trying to understand why they say the things they do. How often do abled folks put themselves into our heads? How often do abled people think about what it must feel like for us?

    That right there is something amazing that Allies could do. Center our feelings in the discussion for once.

    -article author

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  8. As a person who experienced the worse pain known to mankind that was also invisible...for 5 solid years..I can relate to all of this...no one could see it but me...It was a very lonely place to be..Thank you.. this is very touching and inspiring..for someone in that place or someone who can vividly remember that place...LOve ya light Lydia...

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  9. The truth is, nobody wants to imagine what its like to BE in pain daily. While that may sound rude, I'm trying to be flat honest. If you think about ANY situation that is undesirable, its pretty normal for human beings to avoid imagining themselves being in that place. How can a person then, have any sense of empathy at all? Even true empathy can't come close to relating to anyone who is living with chronic pain... but it is required to at least be conscious of what is said and how you treat someone. I believe people who are disabled or who are living with chronic illnesses and/or pain are often put on pedestals because this is what people often do with any situation they wouldn't want to actually deal with themselves. Think about society and who we make into "heroes." People who have dangerous jobs... give up something precious in their lives for the sake of someone else... experience a loss of some sort...

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    1. Wow, thanks for making me even more sh*tty than I already do about my illness and diseases. I'm definitely not put on a pedastal in my world. Such is the life living with somewhat invisible health problems. Should I wear sign announcing my MS so I don't get dirty looks, stares and rude comments such as yours? Maybe when I'm confined to a wheelchair, people might be a little less mean /sarcasm.

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  10. A loved one said,"the way you walk makes you look depressed! It you stood up straighter with your shoulders back you might feel better and maybe Others would treat you better" I have chronic pain and depression. My physical disabilities effect the way I walk. I think how someone perceives me and there for how they treat me... In otherwords there assumptions mad without asking me are the problem. Not my walk or my mood. I don't think one should have to look happy all the time to be treated well. Would be curious to see how you Would handle this in you approach? What do you think a good ally would do instead?

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  11. Thanks for creating this! I will be asking Friends and family ti read it!

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  12. Unknown (Aug 27 12:22), The way I walk also gets stigmatized by people. I'm told I "walk like a duck", which is one of my coping mechanisms for joint pain.

    My attitude is this: do we scrutinize able-bodied people's body language? Abled people often "let it show" when they have a headache or something. Sometimes they even verbally mention it. So why should we be held to a different standard? Again, our life purpose is not to make able-bodied people comfortable. An Ally understands this. An Ally understands that we have our own physical and emotionally well-being too, and takes sick/disabled people's feelings into consideration just as much as their own.

    -article author

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  13. Hmm, I would add 2 things both under the seemingly concerned but really just prying or pretending to be sensitive category:

    1) telling people that they look tired. If they are tired they do not need to be told they look it and lots of ailments make one look more tired than one is (so says this major allergy sufferer and chronic hypo-thyroid sufferer). Pretending concern by commenting inappropriately about looks=insincerity or insensitivity, either are a bad thing. and

    2) asking someone repeatedly if the person is "OK." As in: "Are you OK? because you do not look OK, Really? Are you sure? Are you sure you are OK?...Cause I really was wondering if you are OK. But you are OK, right? You are sure, right. Because you are sweating and now you look uncomfortable, are you sure you are OK?" Actual conversation, all said loudly in a large group in clear hearing of multiple people. Public humiliation is probably not a great way to check on a friend's medical condition.

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  14. Sometimes the seemingly abled are just as disabled but hide it due to trying to assist the person who is unable to push through. Lables are not helpful. Everyone needs respect whether you are a sufferer, supporter or both. Life is not about the individual, it is about doing what you have to do to get through each day and supporting as many others as you can to do the same. I am a functioning sufferer and expert at bluff and it is exhausting.

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  15. It was a good effect as far as I'm concerned, because I like dogs a lot more than humans, but I did notice in my brief stint in a wheelchair that suddenly, only dogs wanted to talk to me.

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