COVID-19 isn’t over for the immunocompromised
The pandemic has felt a bit like you’re in the middle of running a marathon – but you’ve no idea where the finish line is.
I was diagnosed with relapsing MS in April 2019. I started taking the DMT glatiramer acetate (Copaxone) but after further relapses I changed over to ocrelizumab in September 2020.
I’ve been privately testing my antibody response to vaccination throughout this pandemic after every dose of the COVID-19 vaccine. And I know that I haven’t produced any antibodies after receiving 4 doses.
The government has said the vaccine saves us all. But this is not the case for people like me. No matter how many times you put a vaccine in my arm I’m not going to develop a response.
I just want to continue to stay safe
I cried after the government announced its 'living with COVID-19' plan because it's not really living for us. It's existing. Without the reliance of vaccine immunity the immunosuppressed as a community have to rely on other protections. Like wearing masks, withdrawing from society, carefully restricting and risk assessing every situation. And most importantly preventative and symptomatic testing.
I feel like there’s so much social stigma that comes with taking precautions now. I’ve been stared at for wearing a mask and this has made me feel angry and defensive. Some people think that anyone asking for sensible guidelines to continue just wants to pull everyone back into a lockdown. This is simply not the case. I just want the protections in place to continue to stay safe.
No allowances for the immunocompromised
I’m a self-employed hairdresser and I have two daughters aged 19 and 10 who live with me. One works as a teaching assistant at a high school and one attends primary school. These are three high risk settings that mean we need access to daily testing.
My partner works from home but will now have to travel to the office for more face-to-face work, another risk that will require testing. Being self-employed I can’t ask an employer to support me. If I don't work then I'm not earning.
Education settings follow government guidance but there are no allowances for immunocompromised people in those settings. Or for people who have immunosuppressed family members.
Lateral flow tests are our lifeline
I’m angry with this government and I’m scared. Every time I hug my children it's in the back of my mind that I could be at risk of catching COVID-19. We test daily using lateral flow tests. Our lifeline. Every time I work, it's a risk. I no longer go to shops. I haven't been to the cinema, a restaurant, a theatre, had a holiday or seen some family members in person since March 2020. And I don't see that changing anytime soon.
It feels like I’m being forced to choose between becoming more disabled and protecting myself from COVID-19, or managing my condition but putting myself at high risk from the virus.
In the end, I decided that it was best to stay on treatment. I don’t want my family to end up looking after me if my condition progresses.
We need more support from the government
This government could do so much to help our community but it seems there is a concerted effort to abandon us. I want them to take responsibility for their decisions and continue to protect people who are still at risk and aren’t covered by vaccines.
I’d like to see free lateral flow tests for us and our direct family members. Testing saves lives, and I’m actively hoarding tests at the moment as there just isn't any real information about what’s to come.
It’s just so psychologically tiring to not know when this will end.
Take action now
We're calling on the government to protect people at highest risk from COVID-19. But to do that, we need your help. Email your MP now and ask them to join our call, and give our community the protection it needs.
