Friends and family are super important in your adventures with chronic illness—good relationships can sustain you through hard times, while poor ones can make everything a little bit harder. Many spoonies say that when they first got sick, they learned exactly who their real friends were very quickly. That being said, even the best of friends and the most well-meaning of family members will need a little help in order to best help you.
One of the most important things, you’ll find, is the ability to clearly state what you need. This can be hard (especially if you’ve never needed to negotiate in your relationships), but it’s absolutely worth the trouble. Being able to discuss your needs requires two steps:
- Recognize what you need from a person.
To do this, really take some time to reflect on what elements of your relationship are keeping you from feeling safe or comfortable around that person, and what’s in the way of their supporting you. If something makes you angry, scared, or otherwise upset, examine that feeling and see what you learn about yourself and the other person involved. Be sure to consider where the line falls between “wants” and “needs.”
- Communicate these needs in a way that the other person can accept and understand.
First, explain what’s causing trouble. Be sure to use “I” statements (“I feel Y when X”), and tread carefully so they don’t feel attacked. Then, suggest a solution that’s feasible on their end, always focusing on how their actions affect you without making value judgements. For most people, this sort of skill doesn’t come particularly easily—but pay attention and give yourself time to think things through, and you’ll surely end up better off.
As an example, when I became sick, my parents (who live across the country from me) were relentlessly optimistic. They’d tell me to be positive, that a solution was around the corner, and that I shouldn’t consider going on disability just yet. I wanted to tell them to cut it out, but knew they’d become more concerned and persistent if they felt I was “giving up.” What I communicated to them was something like this:
“Mom, Dad, I know positivity is important when dealing with illness, and believe me, I’m trying to stay positive. However, I am faced with a lot of really difficult realities, and when you tell me to be positive all the time or assure me it’ll all be fixed, it really invalidates the feelings I’m having and legitimate concerns I’m working through. I have a much better feel for what’s going on with me and what is and isn’t a possibility, so I need you keep the positive talk to a minimum, and trust my judgment when I’m concerned about something. ”
Don’t forget to ask for help!
Your friends and family will definitely want to help you out, but they might not be sure what’s going to be useful. If you’re uncomfortable making requests in the moment, you may want to sit down with your loved ones and discuss what things can help you at what times (you can even make them a list!). Swallowing your pride and asking for assistance with something you used to be able to do may be the hardest thing you’ll face as a spoonie, but don’t underestimate the positive impact it can have on your life.
Reactions
Not a lot of people really understand chronic illness and how it can affect you, so the majority of folks you meet will probably have reactions that leave you feeling not-so-great. Here are some you’re bound to run across:
“Have you tried yoga? That always helps me feel better when I’ve had a rough week. ”
“My cousin had that but she was cured after eating a fennel-seed-and-rosemary paste—so you should tell your doctor to give you that. Oh, and you should stop eating gluten, too.”
Why these suck
When it comes to other folks’ health, everybody has an opinion. It tends to come from a good place, though—when you tell a friend, family member, or even that nice lady on the bus about your illness, their first reaction is likely to be something along the lines of “how can I make this better”? However, without (and even with) real medical experience, their suggestions tend to be less than useful, and it’s frustrating to hear the same silly ideas over and over again. Plus, if it makes any sense at all, you’ve probably already tried it.
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It could be worse. I know a girl who lost all her limbs AND her left ear in a freak circus accident. ”
“Well, you look healthy! ”
Why these suck
Things like this invalidate the fact that you’re dealing with something very difficult, and minimize the pain or suffering you’re going through.
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“You shouldn’t think of yourself as disabled; that’ll only limit you. ”
“You’re just being lazy. If you stay positive and really put your mind to it, you can do anything! ”
Why these suck
Responses like this categorically deny that something’s wrong with you, and completely invalidate your experience and how you’ve chosen to frame it for yourself. A lot of spoonies struggle with the feeling that they’re just being lazy or making everything up, so anything that affirms that belief is incredibly damaging.
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“Get well soon! ”
“Okay, tell me when you’re feeling better and we’ll go extreme water-skiing again! ”
Why these suck
It’s hard enough coming to terms with the fact that your illness is chronic and not likely to up and leave you. It’s even harder when folks who mean well say things that just remind you of that.
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Pretty much every spoonie experiences these kinds of thoughtless remarks, and for each one you hear, you’ll need to decide how you want to react. Remember that this choice is up to you and can totally vary by situation! If you decide that confronting someone about what they’ve said is going to be too much trouble, that’s just fine; likewise, if you feel like you really need to say something, go for it. You have a right to do either, and no one can tell you otherwise.
This post was excerpted from the informational zine Chronically Badass.
About the Author:
Diane is a newly-diagnosed spoonie living in Portland, Oregon. She runs a blog Spoonie Living (spoonie-living.tumblr.com), and has also published a free, informational zine for spoonies called Chronically Badass (https://gumroad.com/l/chronically-badass).