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My Experience of Self Isolation

There have been lots of new experiences that have happened over the last year and a half. Up until recently one thing that I had not experienced was self-isolating. I didn't know how I would react to having to self-isolate for 10 days, but it was far harder than I ever expected. I have always said that I wanted to give an honest view of what it was like to be autistic, so I feel that I need to be honest about my experiences over those 10 days in self isolation.

During the first few days, I thought I would cope quite well with self-isolation however it became apparent quite early on that this was going to be far more difficult than I thought. I really struggled with the sudden loss of my structure and routine that I was used to on a daily basis. I could no longer follow that routine, I had to create a new one which took a while to adjust to. If this had been the only difficulty throughout this period, I think I would have coped with it a lot better than I did but they were far more challenges still to come. There were many services that I now needed to access that I'd never tried to access before. However, they proved to be really difficult to access services. The first came with trying to book courier to come and collect the tests to be sent off. Being met with unclear instructions and a difficult process to do this was very challenging. I may not have been the one that was unwell, but this is a service for those that are, and it was so hard to navigate. I have talked before about my experiences with medical professionals and my experience during self-isolation shows things really haven't improved. I had to contact my local GP surgery for advice and as usual this wasn't a simple process. It involved more than one phone call and having to advocate for not only my own needs but also the needs of my family member who was unwell. The end result of this was a prescription being sent across but with both of us in self isolation that didn't exactly help with trying to collect it. I'm really grateful to one of my lovely friends who did go and collect the prescription for us but as usual this was not a straightforward process. No prescription had been sent and with the bank holiday weekend it wasn't going to be possible to get the medication in time and I wasn't able to get back in touch with the GP surgery which left me extremely frustrated. This not only created problems for myself but also for my friend who had offered to go and collect the prescription. By this point in the self-isolation period I was really beginning to see the effect it was having on my mental health. However, things were about to get so much worse. Due to there being a positive case in the house it meant that we were involved with the track and trace service. As requested, we filled out the online form to say who my family member had been in contact with and we thought that meant we had completed everything as that's what it stated on the website but unfortunately this is just the start with series of calls from the service. This included one call in particular which I am still extremely upset by the way that both myself and my family member were treated. It was on this call that the person in question was asked to change the way they were communicating to make sure that we can understand what was being said but this was never done. We also made it clear that we had already filled out all the information, but we were made out as not giving the correct information which was very insulting. In my experience I informed them that I was autistic, and I would need changes to the way they communicating this again still wasn't done and I felt mocked throughout the call. I did make a complaint that was meant to be resolved within 24-hours however I am still waiting for this to be resolved. As someone who takes things literally being told that I would have this resolved within 24-hours meant I took that to mean that by the next day something would have been resolved. However, when that didn't happen I made the decision to do as I'd been instructed if I haven't heard anything and to contact the contact tracers again to see what was happening. This started a chain of events that lead to the largest meltdown that I have had for an incredibly long time. With the first time I called I was put through to the same person who the complaint was about who was the same way with me as he had been before and eventually hung up on me rather than helping. The second call I tried to explain what I just happened and this time I was put through to somebody who should have been able to help but again they told me they would have to transfer me again through to that same person who complaint was about. naturally I didn't want to have to explain things a second time to this particular person and again I was mocked and made to feel awful. Despite going into a meltdown by this point he still did not help me, and they refused to put me through to the team that was meant to help me. I therefore tried one final time to get through, at this point in full meltdown mode, but still the only option was to transfer me back through to the same person. I could not put myself through this third time, so I had to end the call which had left me feeling extremely unwell in a time when I was already struggling because everything else going on in self isolation. It has now been nearly a two weeks since this has happened and I'm still feeling the effects of everything that happened. I'm wanting to get some answers as to why it was ok for myself and my family member to be treated like that. I guess I always knew that I would find self-isolation difficult but I never realised that it would be this difficult. Trying to deal with the change in my routine as well as making sure that I was still advocating for myself and my family member, looking after my family member whilst they were unwell and running my business has put a huge strain on my mental health and I feel like this shouldn't have been the case if certain services were more accessible.


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