This was something that had been posted in the Facebook group that I wanted to share in case others were hunting for more information on GBS:
This was written by Robert Mosley and is posted under the "Discussion" tab on the Guillain-Barre Syndrome Survivors FB group. We have several new members and I wanted to post it again because it is a MUST READ for all of us.
https://www.facebook.com/groups/38007116452/
This is for the family and friends of GBS survivors:
First of all, I am not a GBS survivor, my best friend is. I am a below knee amputee, so I have my own demons. GBS not only affects the inflicted, but everyone in their life. Because of its relatively unknown nature, ability to affect everyone differently and general public unawareness; GBS the disease, and by association its survivors, suffer from a lot of the same maladies as Fibromyalgia victims of a few years ago. In one word, disbelief.
Succinct, short, and to the point - DISBELIEF. People tend to not believe the symptoms a GBS sufferer endures. They write it off to 'you're just exaggerating', 'it can't be that bad', or even worse 'you just like taking the meds and being lazy'. Nothing a GBS victim says or does seems to make sense to those around them. The reason, or what I believe to be the reasons, are two-fold.
First - Most people generalize the onset of GBS as most any other medical procedure. The body takes the injury, heals, and recovers. GBS is unlike most injuries. You recover, but only to a point. The worse the affliction, the better the chance a full recovery won't be achieved. In most severe cases, physical therapy is only a partial fix. Unlike a broken bone or other type of injury you can't rehab back to 'normal'. GBS sets a new bar for 'normal' that most people can't appreciated.
Second - Family and friends associate the GBS survivor with the person they were before they were afflicted. That person, to be blunt, is gone. The survivor is a new person with new limitations mandating a different lifestyle then they, and the people around them, are used to. There are two new constants in their life - PAIN and FATIGUE.
PAIN - Depending upon how severe their battle was, most GBS sufferers will have to learn to live with a certain level of pain for the rest of their life. Be it a tingling sensation in their hands, numbness in the lips, or feeling like their feet are dead weights with no sensation, the pain becomes a new factor that most be dealt with. Most people have no idea about constant pain, other than maybe when they had a toothache for a few days, or they hit their finger with a hammer doing the deck. They associate the pain as temporary, the body will heal, and the pain goes away. The younger the person is, the harder it is to comprehend constant pain. With a GBS survivor, the pain does not go away. It's always there, sometimes quiet and nagging, other times shouting for attention. Pain meds are a necessary evil. However, with increasing technology in implantable pain pumps, dosage and management may be taking a turn for the better.
FATIGUE - This is the hardest thing for a non-GBS victim to understand. How can someone lay in bed, or on a couch, for two days, and still be tired? The damage done to the nerves does not allow the body to fully recuperate as we 'normal' people know it. They never fully recuperate, their body has established a new threshold for what is normal. It has also set a new 'wall' not to be exceeded. Most of us can push our body's limits, relax one or two days, and we're back to normal. GBS sufferers can't. They pay a much higher price so exceeding the limit set by their body. It can be best explained, to the layman, as pushing yourself hard at the gym. Your muscles ache, you feel like you can hardly lift your arms or legs. This is what the fatigue factor does to a GBS victim. It doesn't always take a lot to reach this point. A few hours walking around the mall, doing normal errands getting in and out of the car, three loads of laundry or just mopping the kitchen floor can put a GBS survivor in bed or on the couch for days on end. It's hard to comprehend, it's even harder to believe, but it's real. Add in other side factors; such as depression from not being able to do what you could do before, allergies that used to bother you now pound your body, even the weather. A low pressure system comes through and we see rain. A GBS victim who had a serious bout feels pain. Debilitating pain that can last for days.
So, as the family or friend of a GBS survivor, what can you do? Let's start with what not to do. Don't pity them. They don't want your pity. Don't coddle or suffocate them. They are still the same person they were before the injury, their lifestyle has changed. They haven't! The difference you're seeing in them is the adjustments they have to make to get through each day.
What you can do, and it's the biggest help for them, is quite simple. Believe them. Whatever they tell you, believe them. It's hard. It goes against what most of us know, but their stories are true. Believe them, work with them, and give them their space when they want it. In others words, continue being the friend or family member you were before the injury and acknowledge some things have changed. Nobody wanted them to, but they did. Fighting it, or the person, doesn't help. Arguing, threats, or demeaning statements do not help. Believe me, if a GBS survivor could go back to their pre-GBS life, they would! Life has become a constant challenge. Don't add to it. Get some books, visit websites, attend a seminar. In other words, be a friend. Learn what you can. It's amazing: people will buy a Wii and spend hours reading the manual and going online to learn all the little tricks and shortcuts so they can fully understand the system. People will purchase a big screen television and surround sound and pore over manuals for days getting it 'just right'. But they won't spend a little time trying to understand and learn about a disease that affects someone special to them. If the person means that much to you, try to get an appreciation of what they're dealing with. If you don't have time for that, you're probably not that good of a friend, and should just move on. It would be better for all parties involved.
Since my best friend was afflicted over 6 years ago I've learned a lot. And I learned a lot of it the hard way. Despite the changes made to my life by my amputation, I still doubted some of what she told me. But whether I doubted it or not, she was still my best friend and I believed her. I went with the trust and honesty we've always shared and attempted to see things her way. Through research, reading books, and just reading forums on sites like this I'd like to think I've become a better friend. I accept when plans change, things we want to do that don't get done, mood swings and days of rest. I'm mad as hell at the disease for what it did to hear, but I don't get mad at her. It's pointless. Just like you can't change the laws of gravity, or the color of the ocean, you can't change the damage done by GBS. You accept it, and move on. You don't let it come between you.
In closing, GBS changes the life of it's victims. If a family member or friend has been afflicted by GBS, then the disease has also affected your life. How you handle it is your decision. But remember, the best thing you can do can be summed up in two words: BELIEVE THEM. What they say is real, GBS is real, you need to be real. Really.
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