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

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 ‚Äúfix‚ÄĚ 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 ‚Äúus‚ÄĚ ‚ÄĒ 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, ‚ÄúBad day? Want to talk about it?‚ÄĚ 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 ‚Äď 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 ‚ÄĒ surprise! ‚ÄĒ 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: ‚ÄúYou just had a long scary doctor’s appointment?‚ÄĚ ‚ÄúWhat is the¬†best way for you to deal with that?‚ÄĚ ‚ÄúDo you want to talk?‚ÄĚ ‚ÄúDo you want tea?‚ÄĚ ‚ÄúDo¬†you want to be alone?‚ÄĚ 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.