Post-Sepsis Syndrome & the Need for Support

An article kindly provided by the Sepsis Trust

Sepsis is a traumatic condition that can take a good deal of time for your body and mind to recover from. Some sepsis survivors experience a variety of physical, psychological and emotional problems while recovering. This is known as Post Sepsis Syndrome (PSS) and usually lasts between 6 and 18 months, sometimes longer. Some of physical symptoms of post-sepsis syndrome include: lethargy, muscle weakness, joint pain, hair loss, insomnia and changes in vision. The psychological and emotional symptoms can include: anxiety, depression, poor concentration, short-term memory loss and mood swings.

For some, the after-effects of sepsis are visible but, for many people, there are lasting after-effects that you can’t see. This is not to say that the survivor is fully recovered. It’s crucial that friends, families and employers understand the symptoms of post-sepsis syndrome, to help make it easier for everyone. One of the main aims of the Trust is to support those affected by sepsis and a way that we do this is through our support groups which take place all over the country. We are happy to announce that our reach has grown exponentially and we have opened 12 new support groups since January. Mark Stock, a strategic advisor to the Trust is also sepsis survivor, who suffered from post-sepsis syndrome. Here’s his account of his experience with PSS and his journey to recovery.

“I didn’t really understand the enormity of what I had endured; my body had ‘attacked itself’ and so, as with a major operation, it would take time to recover. A voyage of discovery, self-education and listening to those around me over the following 12 months enabled me to realise that I was not 100% better and that just because I looked OK did not mean I was OK.

Three years on, when asked “have I now fully recovered”, I have learned to respond that I am about 95% recovered and I have also come to terms with the likely fact that I may never be 100%. I am sure my post-Sepsis body is a different body to the one I had before and it has taken me three years to get to know my post-sepsis self and accept that I will not get my pre-sepsis body back.

Being able to talk about the after-effects of sepsis in the UKST Sepsis Support groups has been helpful in my own rehabilitation and in coming to terms with my new self. I may not have the same body, and I may have to ask people to repeat themselves as I’m not able to process what’s being said as quickly as before - but as someone who is known for positivity, to accept the mental impact was tough but has given me renewed focus to ensure others do not suffer in silence and I will continue to encourage employers not to assume that the external appearance tells all.”

If you are struggling with your recovery, you can call our helpline and speak to a member of our support team on 0808 800 0029 These are trained nurses with an understanding of sepsis and the problems that can occur during recovery. Or find help on our website at www.sepsistrust.org/get-support