This is a post I wrote before my diagnosis in early 2019, when I was in the midst of tests and uncertainty. One of my recurring experiences was people telling me that I would be okay and not to worry. This felt incredibly dismissive and diminished my experience. After thinking on this I decided to write a post about it to share with others in the hope that they would understand why telling someone that “it’ll be okay” isn’t necessarily helpful.
Why I don’t want you to tell me “it’ll be okay”
Whenever you hear someone tell you of a difficulty they are facing, or some hard news that is clearly impacting them emotionally, physically, mentally, it is often our first response to say “it’ll be okay”. Whilst this comes from a place of good intent, it can sometimes have the opposite effect. You may think it is comforting and supportive, when it can sometimes come across as dismissive or belittling. As someone who has been through a number of difficult situations and who is now facing possibly the hardest situation I think I ever have, I want to share with you why I don’t want you to tell me that “it’ll be okay” and what would help instead.
First, a bit of background. I come from a bit of a stoic family. I think growing up on a farm that is constantly in drought, where you witness animals you love and have bonded with die from accidents, starvation, or disease, that you have no control over makes you harder. You push those feelings down a little more because if you let them take a hold I don’t believe you could really handle living out there, working in that kind of environment. Whilst I sometimes believe that gives me strength and helps me to be resilient in the face of many challenges, at other times I believe it has had a negative impact – making it harder for me to ask for help or to say to someone that I am struggling. This has also meant that when I have asked for help, many haven’t realised the severity of my need (from my perspective) and have assumed I would be okay, because I’ve always been okay – so I guess they are right!
At the end of the day, my life is my life and it isn’t on any of my friends or family to get me through something, BUT that is why we have family and friends – to have someone to lean on and to get support from when it’s needed. With all that said, let me get into this.
Prepare to listen
Right now, I’m in an uncertain and scary place. I’ve had brain and spinal MRI’s that have revealed lesions often seen with multiple sclerosis. As yet, this is not a concrete diagnosis, just a likely scenario. Some days I want to talk about it, other days I don’t, so I definitely appreciate when people are prepared to listen to me, and not interject with “you’ll be okay”. I sit here looking at the beautiful baby boy that I never thought I would have and some days feel it is so unfair that I finally got something so perfect and I potentially won’t be around to see him grow in the way that I had imagined. Sometimes I sit here and think that I’ve been so committed to my health and fitness, how can my body betray me like this and potentially leave me in a situation where I can not be the active and fit person I want to be. Most of the time I think that it is what it is, and I want to be able to talk about that too – that this may be what my life is now and I want to prepare for it, and that’s not a negative.
Most of those who know me know that I am a planner. I prefer to be well informed and prepared for the worst case scenario, for every possible scenario. This isn’t me giving up “hope”. It is me being realistic and feeling as in control as I can in any given situation. There is so much I can’t control, but there is so much I can learn and prepare for which for me is helpful, is a way to cope with such an uncertain future. Not everyone is like this, not everyone understands this, but please don’t tell me I am giving up hope by doing this. I’m not, it’s not a negative or bad thing, it’s my way of coping.
When it comes to opinions or stories of others you know with MS, I’m still not sure I want to know about that, at least not without asking you for your opinions or experience, or perhaps you offering first, allowing me the option to say “not today, please”. I’ve had people already tell me that they knew someone once who committed suicide because they couldn’t face their body breaking down. That’s not uplifting. I have GP friends who have been able to give me more information on the disease and lifestyle of those living with MS which has been helpful – but they have always asked me if I wanted them to tell me more or if I prefer that they didn’t. Trust me, I understand the want to connect with someone in pain and to let them know that in some way you get it, that you feel something for them even if you don’t understand it.
Take a breath, listen first, think about who your friend is and what they need, and then speak.
Acknowledge my feelings
When I say “hey, I’m going through something and I’m struggling”, when you respond with “you’ll be okay” it comes across as if my situation isn’t something for me to worry about. It implies, to me, that I should get over it. It dismisses my feelings and belittles my experience. At the very base of it, it makes me think that you don’t have any comprehension of what I’m going through and that you are not someone I can count on for support. I feel invalidated. Whilst I’m pretty sure you don’t intend that, I’m also not always emotionally strong enough to talk myself back around to the good intentions behind it and hope that I can ask for your strength to help there.
Maybe you are not emotionally available or ready to support someone going through something, and that’s okay. We all have our own lives, our own trials and tribulations, but I guess it would be easier for us both if we could be upfront about that. Instead of saying “it’ll be okay”, tell me that it’s a lot to take in, that you don’t know if you can support me. Acknowledge that what I’m going through is tough, is a challenge. If instead I feel like you don’t understand what I’m going through, it makes me feel isolated, unsupported, and makes my situation push down on me, suffocate me even more.
If you want to be supportive, for me at least, it will make a positive impact to hear you say, “wow, that’s tough”, or “that’s scary”, or “holy crap what can we do?”. When I hear that I think you validate my position, you acknowledge my feelings and amazingly that takes so much of the fear and power out of the tough experience I am going through.
When you say to me “oh man, that’s scary, you are right to feel worried”, suddenly I can go, “yes, it is scary but you know what, I can handle it, I can do my best to get through it, I will be okay.”
Offer help – if you mean it
Many people offer help, I think we feel like it’s what you do. We ask how can I help, we say let me know if you need anything, but to be honest I’m not sure how many people mean it.
Right now, there is nothing to do, there is no way to help other than to be there for me if I want to talk, or if I want to hang out with you. I’ve had it happen a few times in the past where someone has said “let me know what I can do” and my response has been “let’s spend some time together”. Months then go by with consistent cancellations as they are unable to make that time, to give me what I have asked for after they have offered. What I think happened is that they have said what we all think we have to say – let me know if I can help – but when it comes time to help, it’s harder for us to follow through. Now I don’t begrudge that friend as again, I know we have our own lives and our own trials that we are going through, but to save the hurt I would like to encourage everyone to take a moment before they offer help and really think about what ways they can help. If you are only available for a phone call to talk, then be specific, say that. If you are available to babysit, or to make meals for someone, then don’t feel shy to say I can do these things, but I can’t do these other things. Honesty is the best way and saves heartache on all sides.
Don’t tell me not to think about it
It is easy for you to say “just don’t think about it” – you’re not living it. Not a day has passed since Christmas eve when I went in for that first MRI that I haven’t thought about what could be the outcome. I try my best not to dwell, not to let it make me sad or depressed especially when I don’t know what it is for sure, but telling me not to think about it makes me want to smack you.
Tell me you believe in me
This one has a nuance of difference for me from saying “it’ll be okay”. Maybe you say it’ll be okay because you believe that I will be able to handle it, that you think I am capable of coping with whatever I’m going through and you believe I will be okay in the end. Personally I think if you want to say “you’ll be okay”, try to frame it as to why you think I’ll be okay. Right now I think it’s naive of anyone to think I’ll be okay in the sense that I won’t have MS. I’m not saying its a definite diagnosis, but I think it would be naive to not acknowledge it.
Maybe it’s something else, but at the end of the day it’s not nothing; there are multiple lesions on my brain and spine and saying “you’ll be okay” dismisses the severity in my life of that finding.
Not to sound arrogant, but I already know that I’ll be okay. I am strong, I am resilient, but that doesn’t mean I don’t have weak days. I accept the things I can’t change as best as I can, I make plans to be prepared as best as I can for whatever may come as it makes things easier for me. I accept that whatever the diagnosis turns out to be, is what it is. There is no use crying about it (excessively, at least), there is no use giving up on the things that I want or using it as an excuse to not still aim for the life that I want – I’ll find a way to work around it. Some days I feel annoyed that this is happening to me, but who has this ever happened to that’s been fair? And when was life ever fair?
Plus there are plenty of positives to all this. We’ve found this out whilst I am on paid parental leave, so I won’t lose out too much financially and I have the time to make it to the various appointments. Regardless of the diagnosis, it also doesn’t change my wants in life and if anything may help make giving up sugar that little bit easier. It may encourage my loved ones to make that extra bit of effort to visit and catch up when everyone was so time poor before. I live in the middle of a major city with plenty of educated friends who are able to help me find the best experts to figure this situation out and I have enough money saved up that I should be able to afford whatever treatments I need. I’ve already made it through so much, and I know I’m able to adapt to this new challenge – but give me time to process, to be sad, to have tough days.