One of the worst parts about being diagnosed with a medical condition that came with a life expectancy and is considered an “Invisible Illness” is how people took the news once I shared it with them. Nearly every person I told made the situation exponentially worse from a seeming lack of knowledge or etiquette for how to react in a situation such as this. I realized that there was no go to article to teach people what to say and so I wrote what I hope will change that.
What do you say to someone when they tell you they are dying or that they are suffering?
There is no perfect answer but there is one giant faux pas: silence!
Whatever you do- do NOT remain silent. When someone tells you of a tragedy they have experienced and you say absolutely nothing- it can feel like the tragedy is happening all over again because no one has acknowledged it.
Saying nothing for fear of saying the wrong thing can cause more suffering. There is a type of cowardice when someone is more concerned about being wrong than about being present. Telling yourself or others, “I said nothing because I didn’t know what to say.” Is a cop out. Take a moment, pull yourself together and find some words of comfort and care. It’s not that difficult.
When someone you love is in need, I think it’s more important to show up, even if you do so in an awkward way. No one is perfect or an island unto themselves, but we might all metaphorically be the Island of Misfits from Rudolph.
When someone tells you they lost everything in a Hurricane, or their child has been sexually assaulted, or they have a deteriorating disease, or they just lost their life savings, or any other matter of distress, you don’t have to fix the problem or offer suggestions to be of service. Offering unsolicited advice actually usually makes it worse because it presumes the person hasn’t already thought of what you are suggesting and only adds insult to injury.
However, to remain silent is an act of denial and can compound the pain another being feels.
When you don’t know what to say, it’s perfectly acceptable to simply say that, “I want to say something but don’t know what to say.”
Here are 21 more examples of what might be helpful to say:
1. “I’m sorry to hear that.”
2. “I don’t know what to say but I want you to know that I hear you when you share and I’m sorry for your suffering.”
3. “What can I say that will most help you feel heard?”
4. “How can I help?”
5. “I love you.”
6. “You matter.”
7. “I care about you.”
8. “You’re not alone.”
9. “I will keep you in my thoughts/heart/prayers/meditations.”
10. “How can I best support you?”
11. “If you have any literature on this issue I would be happy to read it. I care and I want to know more about what you are experiencing.”
12. “I don’t know how to help but I want to offer you my complete presence, if only for a few moments (because we all have busy lives and no one is expected to drop everything to show up indefinitely), to let you know that I care deeply and I am present for you even if I don’t have the answers or resources to change your situation.”
13. “How are you coping with this, today?”
14. “That really sucks! You don’t deserve to go through this. I’m really sorry for all you are suffering through.”
15. “Would you like a hug?”
16. “I’m willing to listen if you need to talk/vent or if you just want to be distracted.”
17. “I know that everyone in the world suffers but I also know that when we personally suffer it IS our whole world. You have my compassion.”
18. “This is horrible and not fair but I know you and how strong you are. I know you will rise like a lotus flower out of the muck. I know that you of all people will find the light in the darkness of all of this and that you will end up helping others in the process; because that’s who you are and that’s what you do!”
19. “I’m here.”
20. “I stand with you.”
21. If you can’t think of anything to say at all – mirror back what you just heard – that’s polite recognition at the very least.
I have spent most of my life in caregiver mode whether as a volunteer to those in need, to children, to elders, to friends, and to family. I am the person others defer to when they don’t know what to say. When something bad happens to me, many people don’t seem to know what to do. Before my sister died she said, “The reason our family checks out whenever you are in need is because we don’t feel like there is anything we can do to help. You are the one we come to with all our problems. We can’t even deal with the reality of you needing anyone because you take care of everyone. It’s too scary for us to imagine you as weak or in need when we all depend on your strength. We ignore it until it goes away because that’s all we can do.”
What is helpful- is to be heard, seen and acknowledged. To know that someone in the world cares as much for me as I care for them. I don’t need to be rescued, or to be offered well intentioned yet ill-informed suggestions.
We suffer in silence when what we share has not been acknowledged.
I may not have been blessed with a family of origin who were able to care or show they care, to the extent I would have liked but I have been blessed with a handful of wonderful friends. I am so grateful for all that I do have.
I absolutely believe that most people are doing their best. I do not harbor bad feelings toward anyone who has chosen silence as their response to our situation, but I used to feel hurt as a result.
I’m grateful to those who have reached out and been present and I do my best to make sure my friends know that I value them.
It’s really been a master class in life- to go through so many years in physical pain and suffering from seemingly every angle. Perhaps I was always the giver because I was so much in need. Maybe we give most what we most want to receive.
Regardless, I can soothe myself with a sense of pride that I have always done my best to be a good listener and a fully present witness to anyone in need. I now know, in a way I did not before, that I have made a comforting difference in the lives of many, just by acknowledging their suffering. I know that I helped people feel less alone. This gives me a sense of peace that I didn’t have before. I may have many flaws but a lack of demonstrative compassion is not one of them.
On that note: here are some things NOT to say:
1. “You must have done something really bad in a past life to deserve this karma.”
2. “Have you tried (fill in the blank- vitamins, essential oils, collagen supplements, visualization, reiki, acupuncture, massage, physical therapy, hypnosis, meditation, medication, fasting, vegan diet, paleo diet, yoga, exercise, going gluten-free, etc)?” The answer is yes to all of the above and much, much more.
3. “Me too! Listen to what I am going through.” (While I do care what others are going through, hearing about it as a first response to what I just shared doesn’t make me feel heard. Not as the first sentence right out of the gate, at least. One-uppers can’t help themselves. This is how they relate to others. I’m guilty of it myself. I get it. Doesn’t make it OK. A good balance might be to say, “You have my empathy because I suffer from chronic pain too. Tell me more about your personal experience so I can better understand. I’m curious because I care.”)
4. “That can’t be right. Are you sure?” (Um, yup! Three geneticists opinions sure.)
5. “What were we talking about before you just said what you said?”
(Translation: I am a narcissist and can’t be bothered with information about anyone but myself.”)
6. “I have a friend who has that same disease and she is just fine.” (Then she doesn’t have the “same” disease.)
7. “Have you accepted Jesus Christ as your Lord and Savior? That’s all you have to do and this will disappear tomorrow if you just have faith.” (There are many Christians with EDS- who are not cured. There a battlefields full of Christians. Faith helps us through life but it does not preserve our life. I was born with a faith that is deeper and more profound than most can imagine but faith is not analogous to religion and for that matter- religion may have little to do with Christ- chew on that for a minute.)
8. “Your beliefs create your life. Read Louise Hay. You have a victim mentality and you brought this upon yourself. Haven’t you seen the movie THE SECRET? Don’t you know about THE LAW OF ATTRACTION?” (Yes, I have and yes, I do. I have spent over 30 years studying world religions, spiritual practices, quantum metaphysics. I think it is you who is confused about how these philosophies work. We are co-creators of our lives, not sole creators. My body may not be in alignment with, or a reflection of my spiritual beliefs but maybe my soul is; the law of attraction is working both with the earth body and the higher self. This is a complex theory that is too often over simplified, misunderstood, and used as a tool to be abusive to self and others. I’m not playing that game.)
9. “Bummer, Dude! What’s for lunch?” (AKA I’m not in the business of compassion. $h/t happens. Life goes on. You are just a tiny, meaningless blue dot in a massive universe. Get over yourself and hang loose, catch a wave, have a toke, get a grip, move on!)
10. “You think you have it bad? Do you know what’s happening in third world countries? With global warming? To honey bees?” (Yes. I know that there are problems bigger than my own but I am living one life. I am not in a third world country. I am not a honey bee. I am not a melting planet. I am me with my own issues and a full plate of problems just doing the best I can with what I have, one day at a time.) A little love can lighten the load.
EDS is not my identity, it’s my job, the thing that takes up the majority of my time. I am not EDS, but EDS is a part of me. The minute I stopped fighting it, everything in life became easier. There are times when it’s overwhelming, especially when my daughter suffers from it. Then there are times when it’s just background noise.
My motto in life is, “The only constant thing in life is change.” I’ve learned to manage the waves of discomfort and enjoy the tides of bliss. I have a large tool box for managing the challenges in life like EDS. I practice metta (loving kindness), meditation, gratitude, acceptance, raising my frequency, intention/visualization, choosing my thoughts, spending time in nature, loving and being loved, and indulging in all facets of artistic and creative expression.
EDS sucks but life is still good.