Tuesday, April 5, 2016

Not holding back

I recently received the following email:
Feb 23, 10:30 PM 
In the same boat... 
Hi Richard,  
I was going to apologise for the unsolicited email but then I realised that it was probably how most emails - the ones you may choose to ignore - start, so I will begin by saying thank you. 
I came across your blog "My real life unnecessary nightmare" and it helped me. It showed that there was a life after "mysterious illnesses", IT builds resilience and strength, you learn to re-assess yourself/your life, build yourself in ways you couldn't have, had you not had this illness. Most importantly it is always a relief to hear or to read that it is not all in your head. 
I don't believe in fate but it is a hell of a coincidence that you happen to be working or specialising in the field I aim to one day. It is inspiring, you inspire me and all I wanted to say was thank you, thank you. 
You are most welcome, Marie. I’ve received several messages of this nature over time, and I’m always very touched.

However, I’ve also received several messages of anguish and frustration from people struggling to make sense of their own situation and looking for specific information in my blog that will provide relief. I am upset by the pain they are experiencing and the failure of their doctors to provide needed relief, but I don’t have names of other doctors they should contact or details of the treatments that they need.

If you find yourself in a situation similar to that in which I found myself, don’t give up hope. Read the advice given by Susannah Cahalan in her wonderful book, “Brain Wreck: A patient’s unrelenting journey to save her mind and restore her spirit”; I quote a subset of her advice in my post, “Not giving up, and giving forward.” Read “Questioning Protocol,” a wonderful book by Randi Redmond Oster which is filled with great advice; some of that advice is available via Randi’s “Help Me Health" website and her "Help Me Health" Facebook page. Check out online communities such as patientslikeme; perhaps they will yield the information you need.

You are probably not pleased to be told to go read more things, but I don’t have the answers both you and I wish I had. You might find that Susannah and Randi and patientslikeme don’t have those answers either. But I believe that those of us who have written about our troubling experiences with the healthcare system have provided about as much information and guidance as we can. I don’t believe we’ve been holding back.

Once you've uncovered the specific information that ultimately provides you with relief, please tell your story in a similar or better fashion. At the minimum, please let me know.