The Impact of Guillain-Barré Syndrome (GBS)
One of the things that we get asked about most is ‘what is the longer term impact of Guillain-Barré Syndrome (GBS).’ This blog looks at what impact actually means, and what a GBS diagnosis may mean for you and your family. If you want to know more about the GBS journey, then check out our other blogs in this GBS series.
Physical Impact
The biggest impact for people is likely to be the physical impact of GBS. During the initial stages of GBS, the impact is obviously massive, with the potential for partial or full paralysis. As you recover, you may need rehab as hopefully you regain strength and mobility. However, for some people there can be longer term physical issues ranging from pain, numbness, fatigue, and tingles, through to problems with walking and getting about. It is difficult to determine how long these will last, and while some people make a full physical recovery, others may unfortunately be left with some permanent impairments.
Emotional Impact
While physical impact is often (but not always) more obvious, the emotional impact of GBS can be more hidden. The physical impact of the condition can have an effect on people’s physical and mental health, as physical symptoms bring people down, and can lead to social isolation and loneliness (even for people who are surrounded by others). We should also not underestimate the impact of trauma on people who have had GBS. The trauma of illness, ICU, ventilation, and a diagnosis of a potentially life changing condition can all have negative impacts on wellbeing. Finally, for many people who have had GBS, the fear of it returning can be life limiting.
Financial Impact
Any illness that means that you can’t work can have a significant impact on individuals and families. Hopefully, people with a secure job will receive sick pay, but this isn’t true for everyone. Losing an income can have a devasting impact on people. For those people who aren’t working (and for those who were), GBS can have additional financial impacts and push people towards or into financial hardship. The costs of travelling to and from hospital, additional costs of equipment, and even the costs of heating or cooling your house will have an impact. GAIN may be able to help with Personal Grants, and we will look at these in a blog in a few weeks’ time.
Impact on Families
It is not just the people who have had GBS who are impacted, but also those around them, their families, friends, and circles of support. Family members may find themselves having to do more in terms of childcare and housework, with some people having to also take on carer responsibilities. This extra strain can have impact on the physical and emotional health of family members, as well as on relationships. A GBS diagnosis can be difficult to explain to children, and also many people report that friends often don’t understand the issues associated with a condition they have never heard of, or can even pronounce! This is especially true as people recover, come from hospital, but are left with life limiting impairments.
Ongoing GBS Support
GAIN is here to support people and families impacted by GBS, offering information, advice, and guidance; providing practical support where it is needed; funding and undertaking research; and raising awareness. If you’re looking for support, to have a chat or ask questions, why not join our monthly Get Togethers or sign up for our GBS Newsletter.
If you want to know more then you can read our blog series on GBS, or reach out to us, we are more than happy to support.
