I just found out that someone I know/my loved one has Moyamoya Disease, how should I respond?

After finding out the diagnosis that I had this scary, high-risk disease... I yearned for support from family and friends. I have come to realize that it is not easy for people to respond to such "tragic" or negative news. Even for myself, sometimes I don't know what to say or respond when I am told "bad news".

After much thought and reflection, I'd like to give some suggestions - coming from my own experience as the sick person and giver of bad news...

Avoid saying, "stay strong" and/or "everything will be OK/alright".

I'll be honest and say this annoys me to no end. I do, however, understand the good intentions of the people who tend to say this in response to hearing bad news. I get that the person is attempting to comfort me, but actually... it makes me feel worse. Maybe not everyone will have the same response as I did, but there are people who feel the same way.

The reason why I felt worse after hearing that was because I was already feeling awful and afraid of what is to happen in the future. To tell me that I should "stay strong" made me feel like it was wrong for me to feel weak, anxious and afraid. I felt as though my emotions were dismissed and that I had to put on a mask to show I'm strong. But who benefits from that? Honestly, sometimes it seemed as though it would just make it more bearable for others because they were feeling uncomfortable. So I had to put on a facade so they wouldn't feel uneasy around me.   

I tend not to say "everything will be OK/alright" because... let's face it. Even my surgeon can't tell if anything bad would happen to me. For someone who is not in my shoes, and not struggling with my disease... you wouldn't know the anxiety, the anguish and the fear of the unknown that one experiences. To just say, that everything is going to be OK made it feel like you don't understand what I am going through and you're simplifying a complicated issue. A person with Moyamoya risks suffering from strokes before, during and even after surgery. This would mean that there will be major changes in the person's life and he/she will have to learn to adapt to these changes. There is also a sense of anticipated grief, because there may be things that the person used to enjoy doing, but may not have the chance to do them anymore due to this disease or the effects of this disease. So please don't comment lightly. 

So what do I say?

Honestly, I think sometimes we just need someone to BE there. To be present at our time of need and distress. Just sit with that person. You don't have to say anything. The more things you say, the more likely you would make the person upset. If the person is willing, give him/her a hug... or just put your hand at an appropriate body part (e.g. thigh, shoulder, etc). If the person is crying and you feel so much for the person, let out the tears... you don't have to hold back. To me, it shows that you are grieving with me. And you understand and feel the pain I'm going through. But please... this has to be GENUINE. No crocodile tears, please.

If you have to say something, think - "what would I want someone to say to me when I'm hurting? How would I be feeling if I was the one who was given this diagnosis?"

Empathize with that person. 

eg. "I'm sorry to hear that you have this disease...."  

"I can't imagine how scary it is to be given this diagnosis..."

Let the person know, if you wish to support that person (physically, emotionally, mentally, spiritually).

But don't be too pushy. Don't insist that he/she needs your help. If the person tells you he/she doesn't want or need help from you, please don't take it personally or be offended. Some people need their space to process what is going on and what needs to be done in the near future, especially after hearing devastating news. 

eg. "If you need a friend to talk to/If you need help, please let me know and I will try to support you the best I can..."

Please don't promise the moon and stars. Commit to what is feasible/realistic for you. If you let the person down after promising to help in certain areas, it will add to the person's stress. 

Be honest with the person if you are unable to provide any assistance or support when asked. Don't feel obliged to say yes, but in the end, not keeping your word.

At times, you can check in with the person to see how he/she is doing. But do let the person know that he/she can tell you if they feel that you're intruding into their space. Back off a little if needed. 

Personally, as a Christian myself, I found great comfort when Christian friends asked if they could pray for me. And they prayed WITH me. Again, don't force or insist, ensure that you have gotten consent first and only ask if you actually want to do it. 

At the end of the day, the most important thing is to be sincere and genuine towards people who are struggling with bad news. And sometimes, we don't need to DO something to comfort others. You just need to BE THERE (without saying or doing anything)... just your presence might make the world of difference to someone who is hurting...