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

I received feedback in regards to this topic that this was a rather eye-opening post, in regards to how caregivers/loved ones should respond to a person who has Moyamoya Disease. After some reflection, I would like to add this bit.

The first tip that I gave in the first post for this topic was to avoid saying things like "it's all going to be alright" and/or "stay strong"... because those words of encouragement may end up being more upsetting than uplifting. This also leads me to my next point.

Avoid being the "doctor/advisor" to your friend

I had a difficult time phrasing this... but I've had people dismissing my symptoms especially when I am in physical pain at that moment. I understand that the person may be trying to get me to "think outside the box" or to help  me cope, and probably that person is trying to "comfort" me that maybe my pain is not due to my disease... but saying things like, "don't think about it and the pain will go away" does NOT help. I say this for several reasons:

1.  My pain doesn't come because I'm thinking of it, neither am I willing for it to interfere my daily functioning.

2. If I could easily control it by not thinking of it, I would never be in any pain at all.

3. This statement makes me feel very misunderstood and helpless because I'm stuck in a very uncomfortable/painful situation but I'm being made to feel as though I'm not trying hard enough to "get better".

When your loved one who is suffering from Moyamoya disease were to share with you that they are in physical pain, do remember that they are feeling very vulnerable. So it is important that caregivers and loved ones, be emotionally present with them. Do not discard their pain or say that the pain is occurring because they are not fighting it enough. I think empathy is the most important appropriate response for this. Think about how it's like for your loved one to have to go through this. I realize that we tend to go into "problem-solving" mode immediately, hence the temptation to give advice comes very naturally. But sometimes, all we need is a friend who is trying to understand what we are going through and to be present with us in our suffering. Leave the advice-giving to our doctors/surgeons. Again, I will emphasize that sometimes, a hug and/or a short simple "I'm so sorry that you're going through such a tough time" will suffice. 

What is very damaging is when someone labels their loved one a "hypochondriac" or assuming that they are trying to "seek attention". That happened to me when I was younger. It really broke my heart whenever I heard those words. In the end, I stopped seeking help from those particular people but tried to find out on my own what was wrong with me. You don't want your loved ones to feel rejected and pushed away from you.

I apologize if my posts sound as though we Moyamoya patients are demanding. But these suggestions can be applied to any other person who is grieving or has received a different kind of diagnosis. The reason why I have put these thoughts in writing is that I hope to improve communication between caregivers/loved ones and people who are suffering from a disease. 

I would also greatly encourage that loved ones/caregivers have a heart-to-heart discussion on how they can help support the patient as everyone has different outlooks and needs. I'm only able to cover several things that may apply to some people, but others may be different. So find a suitable time to be able to ask how you may be able to help to make things more bearable.