This week is international loneliness awareness week 2021. I don’t usually jump on to these awareness things because quite often I feel that we are banging a drum and no one hears us… even though that specific week is all about us carers…
This week means a lot to me, as a person, a mum and a carer.
Loneliness comes in an earth shattering form like no other, it holds hands with grief, guilt and alike in order to make you feel really isolated. As a parent, I felt this long before others. I was a young mum, I had been married by 18 with baby in tow already. I learnt to grow up very quickly, this isolated me from friends heading to college, university and working. I didn’t care, I was sad to miss out at times but on a whole, this is the life I chose and I would never regret it - or her.
Special needs parenting however, is a different level of loneliness. No one knows how to speak to you, what to say or how to keep up with your medical jargon for starters. They either pity you or feel they can’t whine or moan around you as you have it worse off and you maybe offended so they avoid you. You don’t get invited anywhere as your child can’t do what their child can, they don’t want to upset you by asking so just avoid you. Family, family think they are doing good by saying “don’t worry! She’ll catch up” or “don’t worry, you’re strong, you’ve got this!”… I in fact didn’t have ‘it’, still haven’t got ‘it’ and waiting for ‘it’ to fucking show up! They say these things because they care, they are behind you when shit hits the fan but at a distance as they will never truly understand.
And that is what causes the loneliness. This lack of knowledge and understanding.
They don’t know all the things I know about Delilah, they don’t know how it feels to have sat in many waiting rooms to hear earth shattering words… they just don’t know. That is not anyones fault either. Let’s face it for all we know, we still don’t actually know do we? We are just trained to be there for our children so that is all we know.
When we have a child with additional needs enter our family our lives are flipped upside down, back to front and over again hundreds of times. For weeks, months and years on end all we see is professionals. We learn a life we never knew before and have to suck it up. You become isolated from work, friends, family and yourself. At times you will sit in a room full of people and still feel lonely. You become seen as a ‘carer’… your identity may leave and you will be referred to as ‘such and such mum’. You will loose you. I lost ‘me’… I used to be soo strong. You knock me down and I get back up hundreds of thousands of times. I never took no crap and I was the one EVERYONE came to. I was the listening ear, the fight your corner, help you arrange things and enjoyed socialising (drinking, let’s be blunt no point sugar coating it). Then, I became riddled with anxiety, I was a shadow to myself. I would nod along to drs, I would say yes sir, no sir, three bags full sir. I would believe in everything a professional told me and isolated myself either further. Some days, it was that bad, I didn’t even want to be here. Anxiety stopped me going out, seeing people and finally even attending appointments. The guilt overtook the isolation and I needed to break the cycle, I couldn’t be like this anymore. Then, by chance my tables started turning, I started to make friends, reach out more and even confessed that I was indeed struggling. I got help, I worked out some stuff and I started to be a new me. A one that still to this day can have days of feeling like utter shite. Not want to see anyone, go anywhere or do anything. I have friends that ‘get it’ as I met them at coffee groups, hospital and parties. I sit alone, peacefully with a cuppa at cafes.
There is a hundred ways of feeling lonely in the world to start with, but especially in the SEND world because people on the outside looking in will never ‘get it’. Only those in this world truly will, so, if you are feeling lonely right now… reach out. To me if you like… I love a good natter, I drink tea, 1 sugar and a bit milk and have an obsession with cake. My inbox is always open and I love a good gif. Loneliness may never go away entirely, but reach out and get rid of it for even just an hour. Tracey x