Being diagnosed with a disease is going to change your life. Here’s how to ride the emotional roller coaster.
As if it weren’t enough to hear the name of a disease. (Insert the name of yours, or a loved one’s disease here __________.) The words “diagnosis, prognosis, and treatment’ in the same couple of sentences from a doctor you suddenly hate change you. After you learn you have a brand spankin’ new illness, you must deal with your whirling head. Whirl, it does — your thoughts touch lightly on topics like child care, finances, and stupidly along the lines of hoping you will be able to finally finish the porch, the bedroom, the re-carpeting before the whirl dashes off to land on others like “How will I handle treatment? Will I ever regain feeling in my feet? Will I ever stop being dizzy? Will I ever stop being afraid?”
When I was diagnosed with transverse myelitis, a very unsexy-sounding ailment, my own thoughts went into the brain blender, too. I laugh now when I remember sighing with relief that what had been plaguing my body like the deranged stabbing of a voo doo doll wasn’t MS. Yet. Foolish mortal.
After nearly a year of living with this inconsiderate hijacker in my body, I have come to a mostly peaceful place and I would like to invite you in. Believe me, I recognize when you are newly diagnosed with anything that you might not be ready to take the first step through the door, you might not even be able to see a door exists, or that there’s a door knob in front of you. I assure you there is. I’ll even make the first move. Just give me your hand and your ear and I’ll tell you what helped me most when I was newly diagnosed with a life-changing disease.
#1 In moments of indecision, before the diagnosis spills out of your doctor’s mouth with as much grace as a baby upchucking their meal, you will live in what can only be described as a hell vortex.
Not knowing what was making me ill meant what I had could be a figment of my overtaxed imagination, could be stress, could be a gluten allergy, or spruce-celiac, a brain tumor, blood cancer, or metal poisoning. Could be a bump in the road or a medical sinkhole. Be gentle with yourself when you are going through this phase. Accept that there are likely two sides to you right now. The normal side, or the side to which you most identify each day, and the crazy side. Hello, maybe you two haven’t met? The insane side of you is in there and when it comes out may scare you. It’s intense, threatening, foolish and rash.
Let your new lunatic be as it is, don’t embrace so much as merely accept, while allowing this goon to streak up and down the corridors of your mind and shout babble at you. Don’t make them too welcome. They might stay if you do. This is the time to become acquainted with what terrifies you most and it will scare the devil out of you, which will make you hysterical and unreasonable. Get it out so you can get to the next phase.
#2 People want to help you feel better and in doing so will whisper platitudes which make you want to punch them. Don’t do that.
Sometimes you don’t want to see the silver lining in the effing clouds, when you’ve been victim to a brutal downpour which nearly swept you away. It was night, “the Otter,” my other, and I were snuggling. I was sad, scared, and slowly reaching the inevitable conclusion that my life, our lives, had changed without our permission, my body had likely been permanently altered and I had gotten a real disease. Not the chicken pox or mumps, or even influenza H1N1, this was going to stick around a while and it upset me. I had it and there was nothing that would turn back time, undo it, heal me, or prevent my symptoms from worsening.
Our bedroom shrunk around us until we became two pinpoints on an island, The Otter was doing the big spooning and I was crying as he soothed me, when I stopped him in the middle of his murmurs, rolled over and peered into his face. “It just sucks right now, okay?” I sobbed, barely getting the words out. I waited until he locked eyes with me again, then whispered, “Your girl has a disease, doesn’t that make you sad?” The Otter didn’t answer, just hugged me like he was clinging to floatsam in a typhoon. I let him and we mourned what was and what would never be together. It is one of my best memories, us just allowing and feeling whatever we had to, for each other, for ourselves.
#3 Other people will annoy the shit outta you. Accept it.
When people want to help, sometimes you are hungry to hear what they have to say and other times you have to battle that urge to kick them. If you have a disease, it is not good to get upset, and if you have my disease, you are not even allowed the pleasure of getting ruffled because your whole body will flare and you might find yourself on the floor.
Let other people assist and be gracious. Drink the carrot juice they offer — fresh-squeezed and actually sweet, like carrot milk. That’s not so bad, is it? Family will transform themselves from furniture and tell you the ways they were healed. And why do they do it? Because they love you. There’s your proof if you needed it. Take all the traditional and unorthodox gooey gestures and recognize sometimes these gestures are made to help whomever is doing the offering feel better, feel protected, confirm they have checked the box because they are a decent person with a desire to make an impact, even if they don’t know how. There are a lot of good people out there and guess what? Disease draws them out.
#4 Disease also exposes those who cannot handle your condition.
I have lost friends since I have gotten sick. I have read thinly-veiled social posts by people claiming everyone has something, and why can’t people just get over it? I have been hidden and blocked and no conversation preceded these decisions, leaving me to figure out what went wrong. It is simply this: the journey as a friend is over. Too much time had passed, too much had changed and I was assigned to a different trip without them.
This is just as though they simply boarded a bus to an alternate destination, a place you don’t want to go. But don’t be fooled! They don’t want a seat on your bus either. They can’t handle disease because it’s too real, too close and threatening, and instead of being angry, just try to understand and wish them well. I don’t want someone like that in my life anyway. Neither do you. I want people who have depth, love, who are fearless surrounding me. Thank you, disease, for exposing the shams!
#5 It is not selfish to ask people to handle their business and leave you out of it.
Whether it is a child coming of age, a grown-up who can’t get a grip on life, or a coworker dishing out needless drama. Address it as you must to make sure you are not saddled with extra emotional baggage. It is okay that this time is about you, that you are worried. Disease results in a rude takeover of your life. You are the only person as deeply invested in you. So say it! Whatever it is. “I really can’t answer that question right now. I can’t focus on this decision, I don’t feel comfortable doing that. Can you please handle this without me?” Get used to saying no. People of value will understand. You will get frustrated at these times and you will feel somewhat worthless. Turn to your support group, as the members of your support group should turn to theirs. Try as hard as you can not to project your anger onto others when you feel diminished, but if you do, realize why you did it/said it, issue your apology and move on.
#6 Forgive yourself.
A friend once advised me to be gentle and good to myself and I asked her what that meant. The simple answer is speak to your inner child, the age at which you most relate. I treated myself like I would four year-old me. If I was upset, what would I want and what would make me feel better? My internal dialogue went something like this, “Sweetie, I got you. What did you think would happen, or how did you think you would act? You’ve been through such a blow, it’s natural you would be upset,” and on and on. This step might make you envision padded walls, but remember, there is a person deep inside that only you can comfort, that only you know how to speak to. It’s okay to talk to them and reassure them that you got this thing, this fear, this treatment, this disease.
#7 It sucks for your other too.
We all want to think everything is rosy and right when someone lends a hand to us and no one wants to feel like a burden, but guess what, that shit gets old.
Recognizing a change-up in the household chores or how you’re parenting can suck is fine. It really does suck, and there are moments that even exceed sucking, as you, with the disease know, or you, the loved one, knows. Now’s when you will learn the meaning of sick, that you will experience awe at the level of misery your body can pump out. It sucks eggs for you, for your other, for your kids, for everyone who cares about you. Every emotion in the suck spectrum is valid. You are not a prince or princess people would choose to wait on hand and foot without salary. Your supports have lives and interests and will get resentful if they cannot express how the altered schedule and dynamic affects them. Be strong and listen to your caregiver without turning it into a detriment against you. Let them make jokes and realize the love is strong enough for a chuckle or two. Set tighter boundaries on really tough days, but otherwise, let the emotional fur fly for the sanity of the people who care for you day in and out.
Your caregivers should also actively express how they feel to their own support group. Think of it this way. You are the center circle. Yes you are, you star, you! Your caregivers are the next radiating circle drawn around you and their support group is the next circle drawn around them. There are boundaries between the support group for your caregiver and you for a reason. This permits the venting of their frustration while protecting your feelings. A balance between the constructive sharing of your closest members of the family and their outright bitching to their support group must be struck and protected. We are human and it is important to allow such human-ness to happen without judgment or control.
I was driving home from work when hopelessness, and helplessness descended upon me. I was so tired of feeling numb, electrical, as if I’d been transplanted into a new body. Nothing was helping, no diagnosis had been made. The doctors were stumped although they knew it was serious. I’d become a prisoner and with no way out of my broken body. I called everyone on that journey home, relatives, friends, pleading with them over and over again to help me. “Please, something’s wrong with my body, something’s changed, something’s happened. Please help me.”
I will never forget the moment when I came to the crashing conclusion I had been forever changed, that I was mortal and I might really be dying. Learning you have a disease is a solo journey you take with your unique thoughts and fears. If you are gentle and forgiving, if you allow yourself and those around you the privilege of being human, you will make it in this new reality.