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8 Things You Need to Know If Your Loved One Just Received a Diagnosis

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Your loved one just got a diagnosis. This can be very scary and confusing to comprehend. Surely you want to support them to the best of your ability, but learning about something this severe will probably leave you a bit shaken, a bit unsure of how exactly to do that. You are capable of being a great friend/partner/family member during this rough time, but you might have to adjust your style of support to fit them and their situation best. I’m nearing the end of my ninth year of having a chronic illness and coming to terms with my various diagnoses has had its fair share of emotional ups and downs over the years.

So I’ve put together a few of my thoughts to try and help you figure out how best to be there for someone during this. These eight hints help me, and I hope they help you and the person you care about. Of course, any advice should be taken with a grain of salt (or a spoonful of sugar).

1. Your loved one will most likely be experiencing very conflicting emotions.

Perhaps there’s a feeling of relief, as well as one of fear and uncertainty or maybe anger, frustration and much more. These varying reactions could go on for quite a while. You might also be feeling these emotions.

Even though these sensations are not necessarily pleasant, they are necessary. I have to feel them right now. Please don’t try to “fix” my emotions or help me hide them away. That will just create more for me to deal with later. Sit with me, experience my emotions, listen when I want to talk about them, but don’t push me to talk when I don’t know what to say. Heck, I might feel guilty or frustrated for being emotional and not handling this in a cool and logical manner, so please point out to me that there’s nothing that says I have to do that. Tell me that emotions are here and messy, and let’s just take them for what they are, without needing to judge them or label them, or label me because I happen to be experiencing them.

2. It’s extremely scary to tell someone about a new diagnosis.

Oh boy is this true. I might already be exhausted and drained from the news, but then I’m a bit tempted to carry this burden alone because if I tell other people, how will they react? I’ve dreaded the pained look on people’s faces. I’ve become numb through the monotony of saying the same news to different people over and over. Most of all, I’ve feared a change in other people’s behavior towards me. I don’t want our interactions to change. So much just changed, and I have this sense of steadiness with you and my relationships with other people. It acts as an anchor and I’m worried that if I tell you, it will be swept off to sea and I’ll be left drifting in a complete unknown.

So when I tell you, please don’t change. I don’t want any awkward pauses or looks of pity. I just want you and me, like it was. Yeah OK, if our favorite pastime earlier was extreme sports, we may need to find a new hobby to do together. But that doesn’t have to change “us” — just talk to me just like you did to the old, pre-diagnosed me.

3. Words have extreme power.

The tricky thing for you as a bit of a bystander in this is that even with your complex emotions and how difficult this is for you, it is more difficult for the one who’s been diagnosed. Words, even those that are meant to be comforting or encouraging, might easily bring me down or affect me in unexpected ways. Please do not tell me how scared or freaked out you are by this diagnosis. If I were a betting person, I would say that there’s a 10 out of 10 chance that I’m more scared than you are. If we were little spots placed on the target Robin Hood was aiming his arrows at, I’m smack-dab in the center of the bullseye and feeling all sorts of screwed at the moment. You might be super close to the bullseye and pretty scared too, but the thing is I am closer to all of this and because of that, I will most likely not be capable of comforting you right now. We all need support, but in this moment I need your support more and cannot offer much in return. You will most definitely need support from others. That’s the way these things work; it’s best if we can find a way to share the burden, but it’s really not wise to place more on someone who is already shouldering more weight than you were to begin with.

Sometimes I use a little diagram to help guide me through this. Go ahead and give it a try: take a piece of paper and draw a shooting target and then pretend the diagnosis is Robin Hood. Next, mark in where the different people in your life fit on this chart based on how affected they are by the news. Start by putting the person with the diagnosis in the bullseye, and then ask yourself where you stand. Alright, now add some other people in there. I think it’s best to never unload your fears on someone who falls closer to the bullseye than yourself. If someone is closer to the bullseye than you, offer them your support, and if they’re farther removed from it, then ask them to support you. Please unload your fears; talk about what’s hard for you! This ring of support can radiate outwards infinitely, and that’s how we can all be at our strongest. This is one way to try and minimize the chances that you will unintentionally hurt your loved one with a word.

Also, if someone looks thinner, or has some other new visible signs of their diagnosis come up, please be aware of what you say, if you say anything at all. I never like it when someone tells me I look sick, or tired, or too thin, or bad. On the other hand, it really means a lot to me when someone sees I’m having an issue and approaches it by saying something like, “Bad day? Want to talk about it?” It is definitely a good idea to be aware of all of this, but please don’t feel like you have to walk on eggshells and monitor everything you say.

4. Not all diagnoses come with a path to a comprehensive treatment or cure.

These are extremely difficult and disheartening ones to receive. My illness falls under this umbrella, and even though I like it when people try to be helpful, I don’t find it comforting when people say I should keep my head up and hope for a cure to be developed. That is actually incredibly frustrating. I just like people to be there, listening to what’s going on in the present. If I’m scared about the future, try to focus me on the here and now. Please don’t get me clinging to this very thin veil of hope for something that is realistically at least 30 years or more in the future, if at all. I spent six years hoping for that shining moment when I would get better, and this false hope became disheartening. The fact that I’ve accepted (or am attempting to accept) this chronic or fatal diagnosis does not mean I’ve given up. It took massive bravery and a lot of emotional work before I got here, so please try and recognize that in your loved one if/as they come to this place of seeing their situation for what it is.

5. Please do not give me medical advice.

OK, you can go home, you can Google my diagnosis. You can freak out a little. Heck you can freak out a lot (but please not to me because I’m probably freaking out enough on my own). A go-to reaction for many people at first is disbelief or denial. It’s OK if you have that. Heck, I might be working through that myself. But please do not tell me there’s no way I have X or Y because Z. Please don’t tell me I should try out this awesome new diet that a friend of a friend recommended. Please resist the urge to tell me that I can cure my illness if I could only start this new exercise program or join this new study that you read about in a magazine. I have my doctors and medical team to give me the medical advice. I don’t need that from you. What I need from you is emotional support. OK, maybe some physical support, too. But trust me – with all of the new regimens, medications, action plans, and so on that tend to come with a new diagnosis, I have plenty of people telling me what I need to do.

What I need is someone to listen. Someone to help me follow through my medical regimen while keeping their own doubts about the treatment I’ve chosen to themselves. I know that might seem like a lot to ask of you, but it will help me be the best me that I can be.

6. Please don’t tell me not to worry.

I’m going to worry. This is kind of a big deal. If I’m told not to worry I feel like I’m being brushed aside or being told not to have emotions. Hearing this from other people leads me to hide when I’m struggling from others, and that can be dangerous for me in many ways. I’ve learned that pushing down all of these complicated feelings and ignoring them is no good. And — surprise! — it doesn’t really work. There are some things you just can’t squash into submission. And trying to do that makes it hard to come to a place of acceptance where I’m not angry at my body or the world. Instead of telling me not to worry, acknowledge that getting news like this is frightening for me, and that I am worried. Don’t demonize the emotions I’m having in response to this; instead, acknowledge their presence and try to find ways that we can exist with them.

7. Please don’t tell me it’s going to be OK.

This is kind of similar to the last one. I know this is meant well, but hearing this makes me feel the exact opposite of OK. I’m hoping that at some point I’ll be able to find a spot where I’m OK with what’s going on, but some scary sh*t is happening right now, or just looming around the corner. I have so many what ifs pulsing through my mind and so many pictures of what my future might be like, now that I know the progression of what I’ve been diagnosed with. In a nutshell, I just got some news that really does not seem OK, so someone telling me that just comes across as disingenuous.

And the thing is, do we know it’s going to be OK? No, not really. Or not at all, depending on if you’re a glass half-full or glass half-empty kind of a person. Yeah, we can hope but let’s not get too cocky. How would you feel if you told me it’d be OK and then things took an unexpected turn for the worse? I don’t want that, and my guess is you don’t either. The main point here is that I’m not OK. And now our job is to figure out how to be OK with that.

8. Please don’t be afraid to ask what you can do.

The most touching thing someone can do is ask me what they can do for me. It really means a lot to just ask a little question every once in a while to check in. Something like: “You just had a long scary doctor’s appointment?” “What is the best way for you to deal with that?” “Do you want to talk?” “Do you want tea?” “Do you want to be alone?” Yeah, OK, don’t bombard me with a plethora of questions at rapid-fire pace in one go, but also please do not assume that you know what will make me feel better. In your desire to help me and be there for me, please make sure you are doing what I need and not simply what you think might be helpful. It is possible to be too helpful and in trying to lighten my load, make me feel like I’m being babied or losing some of the independence that I’m still physically able to have. Ask me what I need so you don’t have to guess. I might be numb right now. I might not even know what I want, but I know that seeing that you’re there for me and truly listening to what I need means the world to me.

Alright, that’s a lot to take in at once and might be a bit overwhelming. Hang in there and take it one day at a time. You are awesome and I’m sure you will be a good source of support for your loved one.

Originally published: July 8, 2016
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