Ben's Friends is made possible by generous donors who help pay for the costs of maintaining our network. They share with us, and we would like to share your story with them. Post what Ben's Friends has meant to you!
In your post, we'd love to hear a bit about your Ben's Friends story: how you were welcomed, what the support of your peers did for you, how Ben's Friends has made a difference in youlife and your family's life, or how being here has changed how you cope with your rare disease. Or anything else you can think of!
It doesn’t have to be long. And if you’d rather share your story privately, send a PM to me, or to ModSupport (find them in the members section.) Would you rather do a video testimonial? Even better! Send a PM to ModSupport. They will tell you the easiest way to do one.
Your turn! What has Ben’s Friends meant to you?
Ben’s Friends is the only major networked support group I’ve found that serves us all. GBS is so rare that the hardest part of living with it is the feeling of total lonliness; even in major hospitals in major cities we are the mysterious freaks. I went through my ordeal in Boston with Newton-Wellesley Hospital (Mass General) and Spaulding Boston Hospital rehab. I’ve lived with the risidual effects for over a decade and where I often find myself sharing my experiences and research with people new to this condition on this site, the fact is that Ben’s Friends has made me a part of a community; I am no longer a freak, mystery to medical providers. And where we all suffer very different symptoms in the wake of this destructive disease, the disease itself affected us all exactly the same way and our stories are all similar.
I’m grateful to every one of you; grateful to the adminsitrator who spends countless volunteer hours to make our lives more tolerable, less lonely and even familial.
Hi David, I am the wife of a GBS sufferer! His name is Dwain and he is going through living hell! I took care of both my parents until their death, as hard as that was, this is sooo much harder!
I discovered Ben's Friends less than 2 months after I experienced what was later believed to be a "mild" case of Guillain Barre (which didn't feel mild) following a Tdap vaccine in June 2014. Being from a smaller city in North Carolina, the physicians I encountered initially were unfamiliar with my symptoms and disregarded my pleas for help by sending me home from the hospital to deal with this undiagnosed, unsupported, in pain, afraid and on my own. My family did not know how to help and most of the doctors did not care. They thought I was just anxious or trying to get attention by making this up (said it sounded like a House episode). When I could finally see well enough to surf the internet for someone who could surely understand what was happening to me, I found Ben's Friends. I came up with a positive name though I have to say at the time I wasn't sure if I would ever get better or if you even could from something like this.
Right off the bat, the Moderator welcomed me without any judgments. I found that I could ask any questions any time of the day or night and someone would respond with helpful feedback. I learned so much along the way and have become stronger in my understanding of GBS throughout my recovery. It's helped me turn the negative of GBS into a positive by being helped, helping others and making friends with those on a similar road. Ben's Friends has helped me heal by helping me find all of those 1 in 100,000s in the world and for that I am so appreciative!
One of the consistencies in all cases of chronic, horrific illnesses in a marriage is that there isn’t enough support for the healthy partner; the caregiver. Doctors, therapists, books, agencies all dump more and more on these un-sung heroes and at some point, everyone breaks. You’re shouldering so very much while grieving for Dwain. Your husband is, in a way, gone. Yet you’re also feeling anger, weariness and then guilt. Let me give you permission for ALL those emotions. In time, Dwain’s going to feel guilt as well. He understands better than anyone else what you’re going through. It’s okay to talk to him about this. He supported you through the death of your parents he will want to support you through this. My own wife endured a few years of my poor health and then hit an emotional crisis and extracted herself from our marriage. Twenty-three years married. But after ten years of feeling anger, betrayed, sadness and loneliness I sincerely had to understand her position. Since my GBS I nursed my Aunt to her death and cared for my daughter through a serious illness with a 33% fatality rate. For a while, I cared for them both simultaneously while raising-alone-a teen daughter and our teen foster son. I understood how hard it was for my wife. Another thing I learned is that strength isn’t an attribute we choose, it’s something we’re born with and everyone has a breaking point. And still, people scour at her as the breaker of vows. But “though better or worse” is hard to imagine during the excitement, stress and joy of wedding planning as young adults-kids, really. Frankly, had I envisioned what severe illness would do to us I’d have offered an escape clause.
Firstly, turning to this group is a wonderful start. But there are in-person support groups you can join that will help you. You may be the only GBS case in the room, but what the other care-givers are enduring is exactly what you’re enduring. There needn’t be guilt. There needn’t be comparison of diseases. I’ve been through cancer since GBS and frankly it was easier and less painful. But not for my 80 year old mother who was by my side. Prior to GBS I battled with PTSD. Truthfully, that was the most horrific disease for me and it’s very likely that the PTSD had more to do with damaging my marriage than the GBS. So don’t hesitate to join any type of support group. Let that turn into a social outlet. Go for coffee; dinner; movies. You have to feed your soul.
You need to make sure that you have time for you ever single day. A half hour won’t do it. Nor is it “you time” to sit alone in the den crying after your spouse has conked out for the night. You need to get out of the house, do things with friends, make a “cave” in your house where you can go to read or relax that is just yours. Get away for weekends. If your partner has GBS then the fatigue is so severe that you COULD be away for four days and it would barely impact. Trust me. Arrange for people to sit with him; they’ll know how to reach you and GO. Your new life must move forward, just as Dwain’s will. Taking care of yourself is critical. Shakespeare said, “Th thine own self be true.” Billy Joel said, “Do what’s good for you or you’re not good for anybody.” Mostly do not give in to the guilt.