Congratulations! You’ve just been diagnosed with an chronic invisible illness.
The First Days
During the first few days after your diagnosis, you can expect to experience feelings that alternate between relief (at least now you know what’s wrong) and rage (“Why me and not that bees-itch who cut me off in the Wal-Mart parking lot?”)
When you’re ready to share the news with your friends and family, most of them will listen attentively. They likely already know that something hasn’t been quite right with you, and they want to know what your doctor has said. Some of them will even go home and Google your condition. Some of those people will see the Wikipedia entry lists 20 possible symptoms and, even though you only have to meet 5 of the symptoms, will trust Dr. Wikipedia over your medical-school-educated doctor and declare your doctor is wrong because your illness doesn’t tick all 20 boxes.
A few people will listen to the information that your doctor has shared with you and say, “That’s what she said you have? No, that can’t be right. My step-uncle’s cousin’s soccer coach has that and he’s an overweight middle-aged man. You don’t look like an overweight middle-aged man. That diagnosis can’t be right.” (Unless, of course, you are an overweight middle-aged man. In that case, you’ll be compared to a picture they saw once of a starving refugee from more than 50 years ago. Now, that guy looked sick.)
The First Few Months
At first, you’ll approach your doctor’s appointments with optimism. Each new specialist you see will say things like, “We can take care of that!” and “Oh, there are lots of things we can try.”
Slowly, they’ll begin to grow frustrated–not at you, but with your condition. See, doctors like to heal people and someone with a chronic illness doesn’t really heal.
You and your doctors will begin to accept that, while some of your symptoms are treatable, the underlying condition, and some of the complications that come with it, is here to stay.
During this time, expect your friends and family members to ask, “Are you better yet?” at every social function. Keep in mind, the only answer most of them will accept is something positive, like, “Gettin’ there!” or “I just started a new treatment and I think it’s working!” or “I’ve miraculously been healed of my chronic illness and my vision has been restored to 20/20 and my toe nails are now self-clipping!”
People will respond favorably to any of those responses. What they will not respond well to is, “No, I’m not feeling well at all.” or “Not yet. My doctor has me trying some things, but they aren’t working.”
If you reply with either of those statements, expect to hear, “Oh, but you look great!”
Keep in mind, they mostly mean it as a compliment. Maybe they mean, “You look great for someone who is incredibly frustrated with the lack of medical treatments for your condition.” or “You look great for someone who is so obviously struggling with the physical and emotional burden of your condition.”
However, what you’ll hear is, “You look great, so you obviously have nothing wrong with you. Sick people don’t look great. Stop whining and making me uncomfortable. Sick people, ew.”
Sometimes you might have to cancel plans. You’ll feel torn between attending some functions or no functions at all. I mean, Joe will be totally pissed if you attend Sarah’s party but not his because you weren’t feeling well enough that day. Well, Joe’s an asshole. Forget Joe.
The First Few Years
You will enter a grieving stage at some point. We all expect our lives to go a certain way, and when we lose control of part of that decision-making process, that’s a real loss. Grieving is normal. It’s healthy.
You may join a support group, which allows you to talk to other people who understand what you’re going through. You may then choose to leave the support group because some people only ever complain about your shared illness and it’s harshing your buzz.
You may be tempted to allow your identity to become wrapped up in your illness. Try to discuss topics that aren’t related to your invisible illness when you’re with family and friends. It’s easy to lose perspective when you are constantly dealing with a chronic condition, but remember that life does go on, for you and for everyone else.
It’s normal to be angry and even jealous of people who don’t have your condition. You might idealize their lives, but keep in mind, everyone has their own struggles. Your struggle involves an invisible chronic illness. Their struggle might be horrible halitosis and an eye that winks uncontrollably, but only at creepy men on the street.
You’ll have conversations that go:
Friend: “Well, you’re well enough to be out of bed. Why don’t you do something productive?”
You: “You have time to binge-watch Cupcake Wars. Why don’t you learn calculus instead?”
Friend: “What I do with my time is none of your business!”
Your friends and family are likely bored with your chronic illness by now. They don’t understand why your doctors can’t give you a magical pill that solves all of your problems. You might be tempted to tell them to check their wellness privilege. (Actually, go ahead and do that.) It’s a good idea to give short, vague replies to these people when they ask about your health. It’s often not worth the time and effort it takes to explain all of the hundreds of things you and your doctors have tried already.
Inevitably, someone will pop up with a miracle mushroom tea (I have seen the mushroom. I still have nightmares about that mushroom.) that cured their husband’s aunt’s neighbor’s arthritis, and how different could your unique condition be from the kind of arthritis that sets in with old age? Basically, all pain is just old-age arthritis, right?
These people mean well, but it’s okay to be frustrated with them. It’s okay to say, “There is no way in hell I’m drinking your magic mushroom tea.” It’s also okay to say, “Oh, thank you for the mushroom. I’ll let you know if it works,” and then bury the mushroom deep in the woods where it will never, ever find you.
You may find that a few friends and family members aren’t bored of your illness and have formed a solid support system for you. You’re probably so grateful that you want to enter into a polygamous arrangement with these friends. Don’t tell them that though. It’ll scare them off.
You can expect some things in your life to change. You’ll have to learn as much as you can about your condition and you’ll have to learn how to manage some of the people in your life.
However, not everything changes just because you have a label for your invisible illness. You’re still you.