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Purple Monsters on Parade: Five Things (this) Chronically Ill Person Would Like You to Know

July 16th, 2015     by Denise Reich     Comments

Illustration: Bethany Walrond

Navigating life with a chronic or long-term condition can be challenging. Understanding how to relate to a friend or relative who is chronically ill can similarly be daunting. It’s not always easy to understand what your loved one is experiencing, no matter how well you know them. What would I like my friends and family to know?

1. I might not get well soon. Or ever.

I appreciate the “get well soon” wishes 1000%. Just know that it might not actually happen.

Society tends to operate with the idea that illness has a definitive beginning and end. Even when chronic conditions arise, there’s usually a belief that there’s always “modern medical treatment” available that will solve everything. Commercials for new drugs for chronic illnesses usually depict patients demonstrating how the medication has magically restored their health and vitality, perpetuating the misconceptions that there’s always a cure or effective treatment.

In reality, chronic or long-term illness often deviates from that neat, orderly path, and that’s confusing. Sometimes there isn’t a cure or even effective maintenance treatment. Sometimes it’s hard to find doctors who are knowledgeable about it. Even if a condition is very well managed, every now and then it can still throw curveballs. An illness that isn’t controlled – or which perpetually cycles between flare-ups and dormancy without ever going away – just doesn’t compute at all.

And yeah, it’s scary. It can be very upsetting to know that a friend or family member is engaged in a long-term, or even perpetual, battle for their health. That’s how it goes sometimes, though. Someone with a chronic or long-term illness might never get entirely well. If they do it might take a while, and the illness might knock on their door again at some point in the future. It’s not necessarily linear.

2. I need to talk about my illness sometimes, just as you discuss the challenges you face in your life.

Imagine that there’s a massive sea change in your life that affects everything from your work situation and finances to your interpersonal relationships to the food you eat. Let’s say, for the sake of this analogy, that the culprit is an angry purple monster who has decided to hang out in your living room. He’s shattered all the windows in your house and punched holes through the ceiling. Oh, and he will eat anyone who gets too close to him. For whatever reason, you can neither move to a new house nor get rid of the Monster. You’re forced to cohabitate with him.

Now imagine that nobody wants you to discuss this Purple Monster. Ever. You don’t want to talk about the Monster all the time – that would be boring even for you – but sometimes you really need to tell someone that you’re frightened of the Monster, you resent his presence in your house, and you want him to go away. When you dare to open your mouth about him, though, you are accused of seeking attention or sympathy, being melodramatic or simply “dwelling on things too much.” Nobody seems to get that as much as you’d like to vanquish the Purple Monster and never mention him again, it’s not possible at the moment.

Ignoring the Purple Monster won’t make him go away. And if your friends are weary of hearing you talk about it, you’re infinitely wearier of having to deal with the conundrum firsthand.

Society constantly tells us that we shouldn’t complain, we shouldn’t talk about negative aspects of our lives, and we should “choose” happiness all the time. On Facebook it sometimes seems taboo to post anything other than cheerful updates, memes or cat photos. Unfortunately, that’s not always helpful or realistic. Refusing to talk about the Purple Monster will not make him leave. Similarly, suppressing emotions that society defines as “negative” – anger, fear and resentment – doesn’t make them go away. Acknowledging their presence, however, sometimes might help you cope with them.

3. When I do talk about my illness I’m not seeking sympathy, attention, special treatment or a solution. I’m just discussing my life.

For better or for worse, when you have a chronic or long-term condition it can become part of your day to day life. If I tell you that I’m going to a medical appointment later, it’s just one of those errands I have to run. If I say that I’m not sure that I can make it to a party because it will depend on how I’m feeling, it’s akin to someone telling you “I might not be there because I’m not sure if I will need to work late.” I’m mentioning that there’s an uncertain entity that may impede my ability to participate; I’m not inviting you to my own personal pity party. I’m not asking you to do anything about it. I’m simply stating what’s going on.

And yes, sick people do sometimes take selfies in the hospital, the ER, the doctor’s office and so on. Again it’s documenting and sharing life experiences. I actually did this the other day; I was getting a breathing treatment and I thought that the mask made me look silly. Posting the photo with a flippant caption was my way of trying to laugh at the situation, not playing a sad violin.

4. Chronic illness isn’t a competition.

Back to our Purple Monster. Let’s say that when you mention your unwanted houseguest, the person to whom you’re talking says, “Well, at least it’s not a Green Killer Octopus. You should feel grateful.” Why no, it’s not a Green Killer Octopus. You’re certainly happy about that, because you’ve heard that those cephalopods are nasty customers. Does that change the fact that the Purple Monster’s destruction has a substantial, detrimental effect on your life, however?

I actually do try to count my blessings as much as possible, but it’s incredibly irritating when people seem to think that because I have one illness and not another, it’s inconsequential. Comments like that basically imply, “It isn’t that bad. Someone else has it worse, so stop complaining.” It invalidates and minimizes the ill person’s experiences and concerns, and that’s totally unacceptable.

5. I know you’re unhappy.

And I get it. If the tables were turned, I might be just as concerned, terrified, angry, upset or confused. I might be sick of hearing about it. I don’t like it when you’re unhappy because I love you, but those are valid feelings and you’re entitled to have them.

I won’t tell you how you should handle those emotions. The one exception: it goes without saying that taking those feelings out on me isn’t helpful to either one of us. Accusing me of “not trying hard enough” to get well, for instance, is complete bullshit and you know it. Right now I really don’t need the drama, and neither do you.

Just tell me what’s on your mind and listen to what I have to say in response. Perhaps there’s a chance we can work through it together. That’s what friends are for.

Tags: body politics

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