One of the biggest struggles endosisters face is within the work place. Only last week I met with an endosister who was on a warning for spending too much time in hospital and during an emergency A&E trip, was asked to write a handover by her boss who was stressing about her being away from her desk again.
I confide only to one of my bosses and still limit the information I tell them, because depending on the person, my illness could be taken seriously or as a nuisance or worse - not real. Whilst I've been lucky to have been supported in previous roles with reasonable adjustments, others have not and are discriminated against, bullied and are disciplined in the work place. Even with my reasonable adjustments, the stress I went through to get to that point and the constant paranoia around proving what I felt was real, caused me to feel much worse physically and mentally.
Here's the definition of disability: 'a physical or mental condition that limits a person's movements, senses, or activities.'
When I'm in pain, I cannot stand, I can barely lay down - I spend most of my time hunched over or writhing with the pain as staying still seems to concentrate it. The fatigue caused affects my ability to speak, wake up, remember tasks or think coherently - this is so extreme that sometimes I struggle to finish sentences and it's obvious when I'm struggling because mistakes at work begin piling up. These are just two of the symptoms that affect my life daily, but in addition to these there are - migraines, pain in the back, legs and pelvis, IBS symptoms, vomiting and nausea, black outs from pain, painful and urgent urination - and these are just the more common symptoms.
If the government recognised the condition as a disability, which in my experience and opinion, it most definitely is, then women's stress levels would reduce significantly, which in turn could possibly reduce her symptoms (stress is a well known common trigger) and they could begin to feel better and thus perform better at work (which is of benefit to the employer anyway). More importantly though, this sense of security would be a huge relief and allow her mental health to recover from the anxiety, depression and stress that trying to balance work and endometriosis brings. In addition, if they were in need of a career break to focus on a big operation or some time out to try and rest their body, then they would be supported with Disability Allowance and could actually take the time to do that. One of my biggest challenges last year was staying in work, when I felt like I was breaking down in every way possible, but I had no option of support financially whatsoever.
So if you feel like this is something that needs to change (I really hope you do), please take the time to read the below petition that is currently circulating and share with family and friends, and sign sign sign away!