When I have been in places of anxiety, fear, grief, loss, etc. due to the impact of a chronic diagnosis, it feels that almost everyone trying to support me says or does the "wrong" thing, or is so fearful of entering into my world that they become non-existent until the storm stabilizes. At the time when we most need support, we can feel most isolated. I know that people cannot read my mind to know what I need. At the same time, it is hard to find words to express what is needed. It can be a vicious cycle.
I have one perfect example of everything coming together in just the right way at the right time ...
My father passed away about five years ago in the midst of one of the coldest and harshest winters in recent history. It had been a painful season of life with a cancer diagnosis that moved quickly through my previously healthy, energetic father. After the funeral, my husband, son and myself would be traveling about three hours from the cemetery to a restaurant near my parent's home where we would gather with a few family members that evening. My husband and I had bought a small, weekend cottage in an area near my parents and we planned to spend the night there after dinner. The thought of returning to our darkened cottage that had been closed up for two weeks because of the weather was almost more than I could bear. I knew that snow would cover the walkway, no lights would be on and the temperature would be set at 50 degrees. It was either that or return to our home an hour away late at night. Neither seemed ideal.
Having very little energy to ask for anything from anyone by that time, God gave me the words for an "ask" of a close friend who lived very near to our cottage. I almost choked back the request because it felt too large to me at the time. I asked if she would be willing to drive to our cottage and trudge through the snow to turn on a light and turn up the heat. She said "yes" without a second thought.
At the end of a very painful day, we arrived at our our cottage in the woods with its lights shining brightly. A pathway had been cleared in the snow and the heat embraced us as we opened the front door. On the kitchen table was a beautifully wrapped basket of surprises for us -- nothing expensive, but everything that was needed in that moment. I had not seen my friend for quite some time and, I don't believe I saw her for what a while after that. But she and her husband were with us in Spirit. We were deeply embraced in that moment and not alone. I felt safe.
A friend of mine recently shared this blog link. It is another person's response to this question. This writer offers her perspective as one grieving the death of a parent, but I find her wisdom applicable to those living with a chronic diagnosis. All of these resonate with me. How could she know?? #9 is what has brought me the most pain over the years. How about you? Is there something you might add to this list? If you find some or all of this helpful, you might want to adapt if for your own story and give it to those who are part of your support network. They will likely appreciate your honesty and clarity.
One important note - Although I have traveled many journeys through this land of chronic diagnosis and grief, I know there are times I still say and do the "wrong" thing for someone else who is struggling. Each of our stories and needs are different. We do not know how another feels -- ever. What worked for me will likely not work for you and I may trip over myself in my attempts at compassion. So, offering grace to one another and to ourselves is critical. For the many times someone's support felt wrong and anything but helpful, I have always been grateful that they tried. Likewise, I trust that others are grateful for my sometimes misguided attempts at support.
It seems that carrying an awareness, continuing to learn, and listening with the ear of the heart is the most important piece. When we do that, the rest seems to fall into place and the sense of abandonment and isolation are not so heavy.
If you are in need of support, take the risk of a seemingly big ask as I did. If there is someone who might need your support, meet their need as best you know how and go one step further. It need not be complicated and certainly not expensive.
Prayer is vital and sometimes we need God with skin on as well ...