Coming to terms with a disability or chronic illness has been the most challenging process I have experienced. It is a daunting and emotional process, to say the least. The experience is personal to each individual and it’s important to realise that it is different for each person.
Learning to obtain a positive mindset takes time and the process is identical to the four stages of grief. Below are the feelings and thoughts that I have experienced:
Refusing to accept what is happening or has happened. Ignoring help and support from others. Distancing myself from others. Defensive. Avoidance. Blaming others.
Rage. Anger. Feeling my body temperature rise. A sensation similar to when I experience my ‘blood is boiling”. Confrontation
Upset. Tearful. Crying. Depression. Anxiety. Questioning “Why me?”
Calm. Content. At peace with oneself. Open-minded and willing to accept support. Ability to think logically, rationally and positively.
The first three stages occur in a different order for each person but eventually, we learn to accept what has happened and the changes that have took place.
Why are the stages of grief similar to coming to terms with a newly diagnosed illness or disability?
The grief process is similar to coming to terms with a new diagnosis due to the loss, an unexpected change within our lifestyle. The loss of the life we previously lived. To begin with, we focus on the things that we can no longer do. For example, I loved completing adult puzzle books (1000 Dot-To-Dots, Colouring) however, due to my central vision loss and poor fine motor skills, I am no longer able to pursue these among many other activities.
We could easily compose a list of what we are no longer able to do, but think about it…where would it get us? What would we benefit from making that list? Self-pity? A decline in our self-esteem and mental health
Changing My Mindset
Gradually overtime, I have learnt to alter my mindset. I was never advised on how to change my mindset to a more positive one, I’ve learnt this myself. I’ve came to realise that there is a vast amount of advice available online which suggests ways and methods of adapting to a more positive mindset.
Would have I preferred to seek advice from online and other resources? Honestly? No. Embarking on my own journey to leading life with a more positive mindset was something I needed to do by myself. All of my life, I have been emotionally and mentally dependant on others. Now, as I am physically dependant on others, I wanted to regain some control over my life – particularly my mental health.
I needed to take this journey alone, I made mistakes along the way and I’ve learned from them. Although, the best parts of the journey were learning about myself, who I really am, what makes me happy and what gives my life purpose.
Before I share with you, the things that help me to maintain a positive mindset, I just want to say that adapting to a more positive approach is not easy, not everybody can do it and it certainly does not happen overnight.
Take things at your pace. It’s your life.
How do I maintain a positive mindset?
I’m going to let you into a little secret. You ready? Not long after I set up my blog, I deleted it. I realised I was out of my depth and had no knowledge with regards to setting up a blog. Also, I was always told my writing was poor so I thought to myself, “There is no point in writing, it will be history repeating itself, others criticising my style of writing without offering any constructive feedback.” Henceforth, I deleted all the drafts I had composed and deactivated my account. That was me last October.
But if I wanted to change, how could I if I was just going around in a vicious circle? Always giving up at the first hurdle. Never breaking free and leading down a fresh path. Never stepping out of my comfort zone. I had this attitude for as long as I could remember but enough was enough. I needed to change. Not next week. Not tomorrow. Now!
I emailed WordPress to enquire about reactivating my account. A day later, I received an email to confirm that they would reactivate it.
I’ve now been blogging for 9 months (crazy!) And each time I look at my blog, I do get tearful. Watching UndercoverSuperhero evolve into the blog it is today has been one of the most amazing experiences. I admit, if I’m not sure what a word means or something then I ask fellow bloggers, however all that you see on my blog (excluding guest posts and their content, and free stock images) are all my own. I’m astonished as to how much my blog has grown and continues to grow!
Have I gained any knowledge with the technicalities of the blogging world? A little but I’m learning every day. I do think that I was meant to delete my blog as UndercoverSuperhero wouldn’t be here today – I believe everything happens for a reason.
UndercoverSuperhero has also taught me a lot about myself. Its taught me that I’m actually OK with connecting with new people, to reach out to strangers who quickly become friends. Its taught me to accept what happened to me, in 2018, and that I wish to help others who are experiencing or have experienced something traumatic. Its taught me to be honest to myself and to take care of my mental health.
I’ve lived in a world where I was constantly bullied, abused and judged. UndercoverSuperhero is the complete opposite. I don’t judge, I accept diversity. I don’t bully, I support others. I don’t abuse others; I treat others with respect.
UndercoverSuperhero helps me to maintain a positive mindset by enabling me to express myself. To advocate for disability and raise awareness. My blog enables me to do what I love. I’m unsure of what the future holds for UndercoverSuperhero but I’m doing the best I can to reach its full potential in the here and now.
My past is not my future. My future is the unknown. My present is what I can change now.
Writing, To-Do Lists & Planning
You may think I’m odd, but there is a purpose behind it. I own 20 notebooks and counting. What’s your initial thought? Is it because she likes to collect things? – Partly, yes. But the main reason? If you’ve followed my blog for quite some time now, then you will know I have Ataxia. One of the symptoms of Ataxia is poor fine motor skills which means I struggle to pick up things with my fingers. Early last year, I lost the ability to write. I never had perfect handwriting but I was happy with my handwriting style. It broke my heart when nobody else could no longer understand what I had written down on paper.
A month or so after being discharged from Critical Care, I craved to write again. I asked Mum if she could buy me a big notebook so I could practise my handwriting. To begin with, it was very messy and all over the place. Not only was I trying to write with Ataxia, but central vision loss too. I felt like I was back at primary school, sitting there at a table, practising my handwriting. I did get frustrated and the pen ended up more on the floor then it did beside my notebook.
Each day that I felt I had enough strength, I practised and continued to do so until I reached a point where I’d learnt to accept that my handwriting will never be perfect again, but I can write clear enough for others and myself to understand. Sometimes it does hurt to write, but I can write. I’m not going to take that for granted so I cherish each day that I am able to write something down. That’s why I own lots of notebooks – I will always have something to write in.
Ever since I was little, I loved making lists. Not only do they help me in being organised but they are also a distraction. I have control over the lists I compose, I have the choice to create a positive or negative. Writing down my feelings is completely different as I know I will feel better once my negative feelings are out of my system.
I started making to-do lists around February time, these have been a gamechanger for me! I started off by writing down 1 task and did not add more until I had completed the task. I began with small tasks, for example, replying to an email. I didn’t want to overwhelm myself with too many tasks, at first, as I knew I wouldn’t complete them.
Once I noticed how productive I was becoming, I added 2 or 3 tasks. Over time, my to-do lists have grown. However, knowing that there are 10 unfinished tasks on my list, no longer overwhelms me. Preparing myself gradually has been key to optimising my productivity.
To-Do lists help me to maintain a positive mindset by enabling me to choose my time wisely. To keep track of what I have achieved, regardless of how big or small. They help me to prioritise goals and steps I need to take in order to achieve my goals.
Very rarely do we read about the good side of social media. What others do not realise, is that social media is a lifeline and the only way to communicate with others for some, like myself. I very rarely leave the house; therefore, I do not see many people. I’ve connected with a wide range of people from all over the world. The disability and blogging community are where I feel truly accepted for who I am. I’ve never been able to express myself as I was always judged, but my blog and social media have taught me that it’s OK to be different.
There will be people who are not interested in what you do or what you write about. We can’t please everyone! Remember, it’s OK.
Social media has taught me to stand up for what I believe in, its taught me that by connecting with others, who share the same goals as yourself, together we can make a difference. Twitter is my favourite social media platform as it’s a constant. Constantly discovering new people to follow and engage with.
Twitter has opened up a world of opportunities which I would not have been offered anywhere else. For instance, Kate Beavis, founder of Magpie Wedding, sent out a tweet seeking a disabled bride who had recently got married or due to get married this year. Now, ever since Ewan and I set the date for our wedding, I have fell in love with the wedding planning process. Raising awareness of how to create more accessible and inclusive weddings quickly became apparent that this would be something I wish to pursue.
I reached out to Kate and explained that I would be interested in finding out more information. After countless emails, and once I had submitted my wedding dress shopping experience article, Kate asked if Magpie Wedding could follow me on the wedding planning journey – to which I said yes! I would be raising awareness and sharing my experience at the same time, how could I possibly turn that down?
Social media helps me to maintain a positive mindset by enabling me to stay in contact with family and friends. It allows me to discover new bloggers and like-minded people. Social media enables me to find opportunities and collaborate with fellow bloggers.
Volunteering & Helping Others
I wrote about volunteering being a passion of mine and how my volunteering journey began in a previous post. I always struggled beforehand, to decide on my dream career. Once I began volunteering, I knew where my heart was set. Being part of an amazing team was a bonus! Nonetheless, volunteering in a charity shop truly made me happy.
Volunteering as an online community champion on Scope’s online community has changed my life forever. I may be biased but I cannot praise the community enough! Being able to connect with disabled people on a daily basis prevents me from feeling isolated. Before I joined the community, I was undiagnosed and severely depressed as at the time, nobody believed me about my symptoms and I had nobody to talk to who understood.
The moment I joined Scope’s online community, the moment I stopped feeling alone. Within an hour, I was chatting away to a few members and, to my surprise, discovered another member who was in a similar position to myself. Even though, when I was in ICU, the online community was on my mind most of the time. Continuing to volunteer as a community champion, throughout my hospital and rehabilitation stay, is the reason behind my motivation to improve my typing again.
Without Scope, I would not have met an awesome lady who inspired me to start blogging. Without Scope, I would not have met some incredible people who have become dear friends. Without Scope, I would not have been offered the chance to get involved with a fundraising appeal, guest posts and campaigns.
I am very grateful to Scope; they have improved my quality of life.
I recently was granted permission, by Ataxia UK, to set up a Norfolk Online Support Group for Ataxia UK, on Facebook. Being able to connect with others, who are nearby and live with the same condition, is reassuring. Newly diagnosed, you think you’re the only one – it’s normal to feel that way. But, knowing there are people in your local area, the reality of it all suddenly becomes less daunting and being able to share your experiences helps you on your journey to acceptance.
Volunteering helps me to maintain a positive mindset on a daily basis, as not only is it an act of kindness, but helping others is incredibly rewarding and has a positive impact on my mental health.
Obtaining a positive mindset can present itself in many ways. We aim to change our perception, distract ourselves from negativity and toxicity, obtaining control of a specific aspect. There is no right or wrong reason for how we choose to cope. A coping mechanism that works for you, may not work for someone else. It’s important to understand that this is OK. Each and every one of us is unique.
What we cannot change, we learn to accept. What we can change, we have the choice to make change. We can change the here and now. Some are not granted with the ability to make a choice; they have no say in what needs to change. Those that do, choose wisely and rationally. Don’t let your past or the future determine the here and now.
How do you maintain a positive mindset? Have you come to terms with your disability or chronic illness?