Do you ever feel like you are leading a double life? I don’t mean like a spy, I just mean people would have no idea what your life at home is like? Someone I know professionally recently read my 2016 year in review blog and commented she had no idea we’d had such a rough time in the second half of the year because I always seem so happy. I’m generally an upbeat and positive person so I’m pleased that she had no idea. When I’ve been up from 2am I usually go heavy on concealer under the eyes, slap on a smile and shake it off as best I can. I tell some people about the sleepless nights but after 21 years I find the topic a yawn myself! When I go out I like to leave a lot of the struggles behind.
Recently a few things have happened which made me realise how isolating it must be for some people leading a double life, particularly if there’s no-one they can be ‘real’ with. I’m lucky to have a Mum who visits every afternoon. We stand in the kitchen together. She washes up the kid’s lunch containers and helps prepare BJ’s dinner while I circulate back and forwards doing all the afternoon’s jobs. There’s always a natural flow of conversation and I can be totally real with her. She sees the tiredness, she hears the frustrated phone calls as I advocate for BJ and she’s well aware of the juggle I face day-to-day. She knows I fiercely love my family so anything I complain about is just frustration. She doesn’t judge, though is free with a bit of advice here and there as mothers are. I don’t feel isolated because she knows. And knowing the behind-the-scenes of our family life means she supports us- a vase of flowers from her garden when I’ve had a bad day, dinner cooked for us when we are tired or busy and a little treat here and there. Just a hug and encouraging words help. Sometimes we fall about laughing at the ridiculousness of it all. It’s been 21 years of having her by my side, always there cheering me on and celebrating the highs and picking me up from the lows. To say I’m lucky is an understatement.
Hiding the real situation causes mixed emotions because although I don’t want to share it all the time, there’s periods when I’d love to scream from the rooftops, “People just have no idea!”. The endless paperwork, the medical forms that take me to the doctor when I have no other need to go, the advocating, the frustration when carers don’t do their job properly, waitlists for equipment, appointments, concerns for the future, worrying if I’m doing a good job of balancing life for AJ and being a good wife. And the list goes on. While I have a long list, I’m conscious that I’m lucky on so many levels and many of our community have much greater concerns and life threatening medical conditions. Many are isolated for varying reasons. Some write messages to me because they don’t have anyone they feel comfortable sharing things with.
You may wonder where this unusual blog post has come from. Well, this week I saw a friend bravely tell her story on TV. It’s a different story to mine but the situation she found herself in was isolating in another way. She shared the behind-the-scenes struggles of her family when her mother was suffering violent episodes due to Alzheimer’s Disease. She spoke in a raw but eloquent fashion about the violence that can occur with people who have the disease and how it’s rarely spoken about. That dementia and Alzheimer’s are usually depicted as simply forgetting where someone has put their keys or they don’t remember names. She shared her personal account because she feels that people don’t know or understand what carers, and staff working with patients, are facing. More money needs to be put into this area and unless the needs are highlighted that won’t happen. It was brave and honest and when she spoke of the isolation of living with that situation and no-one talking about it, that struck a chord. People have different double lives but the isolation that it causes is the same. In keeping silent not only does the person feel alone but it affects society’s impression of the illness, disease or disability. It can be an uncomfortable conversation both for the person telling the story and for the person listening. That’s why it’s often kept a secret. Although people may ask how things are, often they don’t want to know how they really are. My friend speaking up helped many feel less isolated. I read the comments that resulted on the TV show’s Facebook page and there was an overwhelming response to her story.
If you’re feeling isolated, know you are not alone. If you know someone who has significant challenges but you don’t know all the details, you can read my tips on being a good friend to someone caring for another here.
Leading a double life can be exhausting and it’s good to let your guard down with someone who won’t judge you and will listen. Be kind to yourself and take some time out. You can read more about how I take time for me here.
Take care everyone.
Lovely Julie! Thank you so much for being such a good friend to me. Please know I’m always here for you too.
And thank you for being a good friend to me. It’s been a joy sharing the highs and lows and getting to know you. It’s lovely to know you are there for me, thank you!xx
“Hi, how are you?” “I’m good…how are you?” I often feel like I shouldn’t give the real answer. Kudos to you for being honest.
Thank you so much for sharing and you’ve articulated it perfectly. It’s important to have those people in your life. Xx
My pleasure Fiona. I hate the idea of people feeling isolated and hopefully sharing our experiences will help a little. Having someone is so very important though. Julie
Jacqueline Samuels says
This is my first time subscribing, I am a Support Worker-student and find your site very informative.
Do you have any challenges with mobility that you want to share with me regarding accessibility then and now?
Firstly, it’s lovely to see a support worker student taking such an interest. We need more people like you.
Accessibility challenges are part of day-to-day life for most families, from finding the appropriate equipment, facilities when out like accessible bathrooms and parking. In saying that, things have improved so much from when my son was little. I can see more awareness and effort being put into inclusion and access which is wonderful.
Seana Smith says
This is good to read because I do feel I am sometimes and that only my friends who also have kids on the spectrum understand… the friends who have kids who, like mine, look good from the outside but are EXTREMELY challenged and actually not coping at all with their lives… well, they really, really do understand… and that’s heaven.
I had a twinge of self-pity when you write about your Mum as I’ve never had family close and for most of the last 20 years they would not have been able to assist due to their own issues. And now my Mum has dementia too…. but like you I am a positive person and am able to count the many, many, manly blessings in my life. Also to do stuff I love every day.
I walked down to a local cafe at 7.30am and got a coffee and walked home, it’s a simple and small thing but for me this is bliss.
I’m sure people are living a double life in lots of different ways, some more extreme than others. I really feel for families dealing with challenges if they don’t have family close by. It sounds like you’ve got friends who understand the challenges and that is definitely helpful but I can imagine along the way simply wanting you Mum nearby.
I’m sorry to hear about your Mum. Dementia is so prevalent now and so difficult for the person and family.
Enjoy your morning walks and coffee, the simple things in life can’t be underestimated.