“I can’t see why anyone would want me”
As a disabled blogger, this is by far the most common message I receive from readers and followers – particularly those in their twenties, living with disabilities and chronic illness.
For anyone out there who has ever felt this way, I get it. I hear you!
Born in 1988 with a rare progressive condition (Ullrich congenital muscular dystrophy), I’ve personally struggled with various insecurities and a lack of self-worth my whole life.
For me, the belief that “no one would ever want me” was fuelled by cruel comments, ignorance and exclusion.
Growing up, I felt invisible, unseen, overlooked, and yet, painfully inescapably obvious to all. I wanted to hide away, and, at the same time, longed for someone to notice me. To see me, the person beyond the disability.
I was one of only two disabled students at a mainstream high school, surrounded by 700 able-bodied kids. I stuck out like a sore thumb! I was the anomaly. And, I was ever-aware of it.
Seated in my manual wheelchair, unable to transfer, weight-bear or self-propel, completely reliant on others for mobility, I felt helpless, useless, a burden.
At 13, during the month of May, I was admitted to hospital with pneumonia. One of many bouts throughout my life. I didn’t tell anyone at school. No one noticed my absence. No one asked. It seemed, no one cared.
Experiences such as this further exacerbated my introversion, isolation, my mistrust in others and the overwhelming thought that I was better off alone. You can only really rely on yourself, right?
My health has always been, for lack of a better word, crap! Deteriorating with the progression of time. It is an incredibly limiting factor. So too is relying on carers. I can’t get myself in or out of bed, I can’t dress or undress myself, I can’t drive, or work. What do I bring to the table?
Spontaneity, what’s that? Everywhere I go, everything I do must be pre-planned. And often, those plans fall through when my chronic fatigue forbids me from leaving my bed for the entire day.
It’s no fun! It’s beyond frustrating and bloody miserable at times.
Why would anyone choose this life? Why would anyone choose to be with me? What can I offer?
I’ll be honest with you, these questions continue to plague my thoughts every now and then. Like a lingering grey cloud that will never pass by entirely.
Yes, I’ve had romantic relationships. Some good, some not so good. I’ve dated both able-bodied and disabled guys.
My brief stint on dating app Hinge was an experience! Guys can be shamelessly brutal, often telling me I’m no one’s type and they wouldn’t consider dating a disabled girl. Though tough to hear, I was never surprised, nor do I bear any resentment. Everyone has freedom of choice and can date whoever they want. I never felt any desire or inclination to convince anyone of my worth.
I won’t lie, my health issues and physical disability did present challenges, cause tension and resentment within relationships. Things were said that are forever imprinted in my memory.
The saying goes, “love is all you need”. I don’t believe this to be true. I think trust, loyalty and the ability to care for someone even in the darkest of times is arguably more important.
Love was very much present in one of my previous relationships, but deep down, I knew it wouldn’t last because I couldn’t rely on him. He was all in on the good days. But on the bad days – my bad days – it became increasingly clear that he wasn’t invested. He couldn’t cope. Love alone wasn’t enough.
I don’t want to feed you empty clichés or try to convince you it will all work out in the end; that there’s someone for everyone. Because relationships are hard, even without the added complexities of a disability or chronic illness!
What I will say, what I want to emphasise to anyone reading this, is to focus on your relationship with yourself. Be kind to yourself, prioritise your health, your wants and needs. Stop worrying about what others may or may not think of you. Does it really matter?
When you do meet someone who is worthy of you, (yes, we’re ALL worthy of love, affection and intimacy), don’t try to hide your struggles and insecurities. Be open, honest and real with them. Let them see you at your very worst.
Some will cut and run. You will face rejection. We all do. This is part of life. Don’t waste your tears over these people. Trust me, it’s not worth it!
It’s easy to find friends and lovers when you’re young, fit, able and care-free.
But, this is where those of us living with debilitating conditions hold the advantage (lucky us!). Because our lives are far from easy and care-free. We can trust that the people who choose to be with us, no matter what, truly do care.