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Sunday, September 16, 2012

Ten Tips for Respect: Understanding People with Invisible Illnesses

This is the last day of the "Invisible Illness Awareness Week," September 10th through 16th. I was drawn to learn about this awareness-raising week while checking out the blog Chronically Creative, a personal account of living with multiple chronic illnesses and also being creative and crafty. There are a lot of people who are definitely creatives and who deal with one or more chronic visible or invisible illnesses. Several major influences in the zine community fall into this category.

While there are plenty of creative people who have chronic illnesses or are differently-abled in some way, I just tend to see the correlation between the two because I tend to know creative folks. I have less connection with people who are mostly into sports, or making money, or scientific pursuits. But from reading the stories of people with illnesses and disabilities online, I know that people of all types are affected. Rabid long distance runners and financial big shots and biochemical engineers alike can all have their lives changed by chronic illness.

I can't speak to the experience of everybody, only my own.

Right now I am too tired because of my chronic fatigue to get up, unwrap this blanket from myself, unplug my laptop, and move to another room in the house to continue typing. I would like to do these things because my roommate is singing in the next room, and it's irritating me right now. I love that he's happy enough to sing, and I think he should. I just don't want to listen to it anymore. Nor do I want to dampen his mood and look like a needy ill person or a jerk by asking  him to stop.

I don't always have the privilege of physically being where I wish to be.

When I do, I sometimes have to employ the help and goodwill of other people in order to get what I need. I'm lucky. There are people who care about me enough to help me, and don't disbelieve me or hold things against me. I'm getting used to asking for help. Slowly.

I have chronic fatigue syndrome which is of variable intensity. At my best, I can exercise moderately daily and work a few very short shifts each week. At my worst, I dread having to pee because it means I'll need to get up out of bed. Putting my arms through the sleeves of my shirt is painful. Sitting at my desk to work on the computer is out of the question.

I look healthy, especially if people don't notice how pale I look when I don't feel well. People may even think I am fit. I am twenty-five years old, and people who don't know me very, very well will assume I can keep up with them. Sometimes I will try, because I'd rather do that than "come out" as having an invisible illness. People may "get" that I can't do as much as they'd expect. But they rarely "get" how much less I can do and still remain OK the next day, the next week.

I'll give you an example. I could bike five miles, walk two miles, run one-- even if I'm not conditioned for it. But what you will not see is me the next day, in bed, watching mind-numbing YouTube videos. You won't see how much it hurts to lift my arms. And I probably won't tell you either, because I would like you to see me as a healthy twenty-five year old if I can get away with it. I would like to not face the possibility that you think I am making it all up. I will not want to face the possibility that you will think of me as less fun, less young, less attractive even.

I would like to be able to tell you "I have chronic fatigue syndrome, so we need to call a cab now," and have you listen, right away, because you realize I might have pushed myself to my ultimate limit before I said this, because I was really hoping I wouldn't have to.

I need you to understand.

People with invisible chronic illnesses are all different. And there are many different illnesses that people may have. But each of them carry commonalities with some others. Most of us have limited energy each day-- our energy budget. We can go over, but we will pay for it eventually. We may not bounce back like others our own age. We may look healthy. We may or may not have a known cause for our illness. We may or may not be able to receive good treatment or any treatment at all. Some of us with legitimate and serious disabling problems have never received proper care. Others have had doctors give them advice based on stereotypes and bad research. Others have had to fight for, and sometimes failed to receive, disability accommodations.

We need you to understand.

From my own experience only, here are a few simple tips for those talking with, working with and befriending folks with chronic illnesses-- especially invisible illnesses. Some of these could apply to people with other disabilities too-- but not all of them. Please do consult materials more specifically oriented toward disability to enrich your knowledge of that, as well. There is crossover-- some folks with chronic illnesses are disabled, and some people with disabilities have chronic illnesses-- but not all disability is also illness. For example, using a motorized chair for mobility may or may not be related to illness. I'm not equipped to address more than a fraction of these experiences.


Tips for Respect: Understanding Folks with Invisible Illnesses

  1. Don't argue when someone comes out to you as chronically ill. Don't say "But you look so healthy!" 
  2. Don't jump to offer solutions that you have heard of from a friend, on the internet, or on the news. People with chronic illnesses have tried, or are trying, many solutions to get better. They may be damn sick of the process but are doing their best. They have heard of a big portion of the miracle cures out there. There is no one who wants it more than they do. You are not likely to be the golden ticket to their wellness. Leave the magic-solution-to-everything that you heard about recently and engage as a human being.
  3. In a similar vein, don't criticize lifestyle. Try to refrain from pointing out that the person could do better for themselves. Again, the challenges faced by the person are probably beyond your knowledge. 
  4. Take them seriously. A chronic illness is not just like the bad flu you once got over or the time you got depressed for a few weeks. Having a chronic illness changes one's life in radical ways. It often implies grief and loss. 
  5. Don't worry if you don't have anything to say, or you can't relate. Acknowledge what the person is saying and indicate that you hear them. Often, folks with invisible illness keep their complaints and frustrations bottled up inside. If you can, make space for the person to vent if they need to.
  6. If you, yourself, are up for it, make a standing offer of real help. Offer to lighten the burden. It might not be accepted-- for a variety of reasons. For example, I hate to feel like an imposition -- so its hard for me to accept, say, an offer of free housework or dinner as much as I might want these. (For me, I'd love it if more people offered in ways that didn't make it seem like a burden to them. For example, a trade, or something we do 'together' where they do most of the work. Even when I am exhausted and in pain, I love to cook, garden or work on projects-- I just can't lift or move so much.)
  7. Ensure people with chronic illnesses, or disabilities that affect access, can participate fully in decisionmaking even if they cannot do the same quantity or type of work as others. In groups, people with fatigue, pain, or mobility issues cannot always express their commitment through attendance of meetings. Recognize that there may be other, equally important indicators of commitment and investment besides the ones able-bodied and non-chronically ill folks typically display. Be open to meeting via teleconference, or conducting some conversations online. Take input from these channels just as seriously as input from those who can be physically present.
  8. Keep in mind that bike culture, commenting on the evilness of cars, and disparaging television and other sedentary activities are all a lot easier to do when you are fully able bodied.
  9. Consider low-energy activities, too. Try being open to being with someone and not doing much. Just talking, watching a movie, or eating a simple meal or takeout can be relaxing and valuable. It can be very stressful for a chronically ill person when it seems like maintaining friendships requires way too much energy.
  10. Remember that you cannot see pain or fatigue. Ask. Listen.
What would you add to this list?

Please share, adapt, and credit.


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