I’m not going to lie to you. Living with a disability is hard. Some days are easier but mostly it is hard. I like to think that I am a strong independent woman, I put on a very good face and I try to live through each day ignoring my disability, my emotions and my pain and that can really take its toll. Physically and mentally.
I was born with Sacral Agenesis and it is all I’ve ever known, my whole life has been a fight and struggle against my disability. Don’t get me wrong, I have had a good life so far, I have had periods where I refused to believe there was anything wrong with me and I partied hard through my late teenager years ignoring my pain and ignoring my disability. Mentally, those weren’t good times for me, I’d come out of school with mediocre grades, I didn’t know what I wanted to do with my life, I found it hard to find suitable employment because of my disability. I struggled with eating and I struggled with the usual teenage woes that any teenager experiences. I struggled with my differences, the boys that said they would have dated me had I not been disabled. I drank too much and was a bit reckless with my life.
As I got older and I met my husband, I started to find that I could no longer ignore the agony I was in. Slowing down and looking at my life meant that I had to accept that I wasn’t well and that kicked off a chain of major operations over the last 10 years. My physical health has deteriorated massively. I’ve had to have both of my ankles surgically pinned and fused. I had to have a golf ball sized bladder stone removed. I’ve had a hip replacement and now I’m awaiting outcomes of tests to see if my hip needs a revision. My recent ankle surgery hasn’t worked and they are currently deciding what to do about that. Some days I can barely walk. Every day is a struggle, I have to be helped off the sofa, getting up my stairs is exhausting and I feel broken. Obviously, this has had a huge effect on my mental health, I had two major surgeries exactly a year apart and for each one I had months of work – my last surgery saw me stuck at home, alone most days for 8 months. Can you imagine being alone for 8 months? Stuck on your bed with no one to talk to, nowhere to go and nothing to do?
Can you imagine waking up every day wondering if you will be able to get out of bed today? It’s really hard. About 6 months ago I decided to face myself head on. I went to my doctor with random chest pains and an inability to breathe. I was diagnosed with anxiety, I was having up to 15 panic attacks a day. The panic attacks are now under control, the physical symptoms of them anyway and I am currently trying to find the right medication to fix the emotional side of my anxiety and depression. I cry most days, sometimes for no reason at all. Sometimes something silly will happen like I will drop a fork and I will sob. I like sit on the kitchen floor and weep, not because I was emotionally attached to the fork, but because I’ve been holding myself in check so tightly that my body needed to let it out.
I don’t want anyone to throw a pity party for me. My life is glorious in many ways, I have a wonderful husband, a loving family and beautiful friends, I have a job and I’m able to buy myself nice things. Most people don’t see my struggle because I don’t want to impact on anyone else’s life. I tend to not even show my struggle to my husband or my family – they have enough to deal with and I hate being a burden.
You’d be surprised how much your physical health can affect your mental health and vice versa really. I’d like to say that I’m doing fine and my life is just peachy. I handle my disability really well. I am brave and strong and take every set back in my (wonky) stride, but that’s all on the surface. People often tell me I am brave because that’s what I want them to think. I often wonder if I’d made a bigger deal of my situation, talked about it more, opened up about my difficulties, would I be better off? I don’t think I would.
I’m seeing a counsellor now and I’m starting to recognise what fuels my anxieties and why I am the way I am. At the moment, I can’t seem to fight it off though and my life is currently more of a struggle than it has ever been.
My advice to you if you are struggling is, don’t hold it in, find someone, talk to someone and don’t hold it all in. It really will make things worse in the long run.
I just want to thank Estelle for sharing her personal experiences with us here on SeeTheUniverse. Please remember that even without putting on a brave face and hiding your struggles from those around you, you are still a very brave and inspirational person. You can be both of these things and still have struggles. Despite struggling both physically and mentally, you never give up, you always try to see the positive things in life and always look out for others and put them first! I think you are fantastic, and I hope you know that I (and many others) am always here for you, rain or shine!
Thank you again for sharing with us, take care and Have Hope Always xo