I remember the day I was diagnosed with what they call a SMI - severe mental illness. There was no blood test or scan, instead years of watching symptoms, relapses and seeing how I reacted to medications. Once I was told what I had, my immediate sense was one of relief. Finally, an explanation for everything that was happening to me and everything I was feeling. It was the first time in a long time the world made sense. The relief was short lived though, as I also remember the consultant saying along with the relief comes a whole other side of living the rest of your life with the label of an SMI. At the time, I had no idea what he meant. Only now, about 10 years later do I fully understand.
Living with a mental illness is living with a hidden disability and no matter how much talking we do, there is still a stigma surrounding them. Often it is the people you least expect who could be struggling the most behind a face they have been used to plastering on to hide their truth from the world. So when you reach breaking point and don’t have the strength to put a smile on anymore, it can shock those around you, including some professionals, making help so much harder to come by.
The problems I have experienced with the ‘label’ have been quite literally in every corner of my life.
I have lost friends because they weren’t able to understand – I’ve also made new friends and seen other friends go massively above and beyond to help me. That more than makes up for the odd bad experience on that front. At work, I’ve experienced both extremes, from colleagues who could simply not be more accepting and supportive, to those who cannot see past my diagnosis and see everything I do as a symptom of my illness.
When trying to access support from mental health services, the label has also rarely been helpful. At times it has meant I have been seen as too complex or too ill to receive support. Other times, I have been seen as functioning too well to be deserving of support. Strangely, these are the times when actually I need it most. With family, for years I didn’t disclose my condition. Even now, I tell the absolute minimum, to the point where even a hospital admission was kept between just 4 members of my family and a couple of friends. Partly due to embarrassment and partly just not wanting a fuss or to feel more of a burden than I already do.
I’ve had so many negative experiences with mental health services, however I understand they are under so much pressure and it is not a reflection on the people working within them or their desire to help. It has however left me scared to engage when I am ill or getting ill for fear of getting a negative response or the final rejection that at those times could be the thing that pushes me over the edge. I therefore often choose to keep things to myself, stop medication, keep going and end up not realising how ill I am before my doctor makes me see. How lucky I am to have a doctor who will do that, I know many don’t- not that I appreciate it at the time. Each time though I feel more of a burden, more ashamed and think I just can’t let it happen again- thinking I have some control over it.
Some days are really hard. Some days I don’t think I can cope with the illness anymore and can’t see the light at the end of the tunnel. Other days I think I’ve totally got this and have a plan to never need that talking to from my doctor again. It’s just not that easy though. There isn’t a cure, this is not going to get better. In fact, the consultant recently made it very clear to me that it will only get worse as I get older unless I am 100% compliant with my medication.
It is hard to understand what is going on with someone who has a mental illness of any type. I would just say to keep checking in and don’t take ‘I’m fine’ as an answer, ask again.
Sometimes all we need is someone to be there, at the end of a phone/text or for a coffee making you feel that you don’t have to face this alone.
Sometimes we just need a hug and to know someone cares. The thing that helped me most recently was a doctor saying to me ‘I have time.’ We all know how busy doctors are, so I knew that couldn’t be true, but just saying those words changed my day and made me feel worthy. I think we are all too guilty sometimes of thinking we need to find the answer to everything, when often what is important is just being accepting, supportive and doing what we can and being kind always.
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