Living with multiple chronic illnesses: what is it like as a young adult?
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Living with multiple chronic illnesses: what is it like as a young adult?
Hayley Jade describes what it is like living with multiple chronic illnesses as a young adult and her battle to cope with an undiagnosed illness.
My story of living with multiple chronic illnesses as a young adult began in my early 20s when my feet started to go numb. I chalked it up to walking too much, having shoes that were too tight or my toes overlapping. Seriously — I have one toe on each foot that hides underneath the one beside. Once I had a boyfriend who joked about taping my toes so they learned to sit properly. I didn’t do it, and they still sit like that. But I forgot about it as I stopped walking so much when my overwhelming fatigue began.
I remember lying in bed during college and finding it hard to get up. My brain felt foggy full-time, and my body felt heavy. My anxiety was through the roof. I started skipping class and drinking. I saw a therapist and then a psychiatrist and went on medication briefly, but it took away the feeling in my vagina — so I threw it away, deciding if I couldn’t enjoy sex I might as well just kill myself.
As the years passed, my mental health declined, and I was diagnosed with an anxiety disorder. Living with multiple chronic illnesses forced me to drop out of school. No matter how hard I tried, I couldn’t keep a job because I wasn’t quick enough, didn’t learn fast enough, or burnt out and called in sick because of anxiety attacks. I had overwhelming fatigue, blurred vision, random fevers, chest pains, brain fog, mood swings, migraines, and cried for no reason in public more times than I could count. My 20s were a mess with trying to figure out what was going on with my body, how to fix it, and how to support myself financially.
I tried everything to make money — from retail jobs to office jobs to gigs on Craigslist. I started freelance writing, which gave me the freedom to work from home, but it wasn’t enough to keep a roof over my head. I moved around a lot, was homeless for a while, and was hungry often. I put myself in credit card debt, took a lot of sketchy gigs — like a random man paying me to give me a massage — and seriously considered full-service sex work — but I wasn’t ready for that yet.
A person can have multiple chronic illnesses
Eventually, I got diagnosed with dyspraxia, which is a neurological condition, and got on disability. Newly financially stable, I was able to take better care of myself with nutritious food, more exercise, and less stress from trying to keep working. I started to feel a lot better. I began to work again — as an escort. I loved the freedom it gave me to work around my symptoms. It forced me to feel sexy again, and the orgasms definitely helped.
But after a few years of trying to ignore my symptoms, I started to get sick more often and have newer symptoms, like pins and needles, numbness, pain, and muscle spasms.
More than one night, I’d drink a bottle of wine because I couldn’t deal with my symptoms. And then, one day, I woke up with my entire body feeling like it was on fire.
So last year, at 28, I decided to make it my full-time job to figure out what was going on with my body. I realized I could no longer ignore what I didn’t understand. I researched my symptoms, listened to health podcasts, changed my diet more dramatically, started exercising and meditating more often, and went to doctor after doctor trying to find answers.
I was diagnosed with ADHD, another condition to add to my list of multiple chronic illnesses, but the drugs I tried made me go out of my mind. Then I realized I’m actually autistic. Autism explained a lot, but it didn’t explain why I was having pins and needles and getting sick so often. I was sure I had some type of autoimmune disease — however when I finally saw a rheumatologist he sent me away saying I was fine.
I started to look for a new GP — until one physician made me vow never to go back to another doctor. I walked in hopeful, giving him a list of all my symptoms — probably around 20 in total — and the man around my age with a man bun wrote off every symptom I had.
Pins and needles? Probably in your head.
Memory loss? You seem fine to me.
You want to see a specialist for chronic illness? That’s not necessary.
He told me there was no reason for my symptoms. He didn’t recommend any tests. He just told me to come back if something else was bothering me.
If it wasn’t for my long term boyfriend pushing me to get answers, I probably would have given up. He encouraged me to keep going to doctors appointments and getting tests done. He drove me to or picked me up from every appointment he could. I saw countless GPs as well as other specialists, had X-rays, ultrasounds, EKGs and so many vials of blood that I’m no longer scared of needles. One night I had extensive testing done in the hospital after I thought I was having a heart attack. I knew it wasn’t anxiety. I had never felt anything like that before.
Everything came back normal.
People started saying that maybe I should consider it was just in my head.
It was terrifying. I could feel my body slowly dying, and all they could tell me was that I seemed perfectly healthy.
And then, I demanded an MRI of my brain.
“After almost 10 years of trying to figure out what was going on with my body, finally, someone said that something was wrong.”
You have lesions on the brain
The new doctor I was seeing told me that the pins and needles were probably anxiety. But I pushed anyway, lied in that tiny, loud, scary machine and told myself over and over this was worth it, this was worth it, this was worth it.
And when that report came back guess what he said?
“Definitely not normal.”
“There are 5 lesions on your brain.”
“Looks like MS.”
And then I thought: Looks like it literally is in my head, motherfuckers.
I felt so validated at that moment. After almost 10 years of trying to figure out what was going on with my body, finally, someone said that something was wrong.
But then the fear started to sink in. I knew what was coming next: More waiting, more tests, more medication, more trial and error, more side effects. I hadn’t wanted to actually be ill — I just wanted to know what was happening to my body.
My first reaction was to go get a drink. But sugar and alcohol make my nerve issues worse — and let me tell you, it’s more than a little bit frustrating when you want to self destruct because of your illness but it forces you to stay healthy. So I had one cider with a lot of water and an appetizer because this is my life now.
Lesions on the brain isn’t a diagnosis
I don’t have a diagnosis yet. I’m still waiting on a neurologist. But I want to preface this by saying that what comes next doesn’t matter. Of course, it matters that I finally get answers and treatment. It matters that this chapter of not knowing is finally over and I can move on. But a diagnosis isn’t the end of my life, it’s the beginning.
Because of this journey, I’ve been forced to slow down to appreciate life more. I’ve become so grateful for what I have: Financial stability, free healthcare, a beautiful apartment, a loving partner, a job I love. I’ve become more understanding towards others.
Living with multiple chronic illnesses as a young adult meant taking better care of myself through diet and exercise. I started only doing what I really want and not what’s expected of me. I now push myself to do the things I’ve been putting off because I don’t know what tomorrow will bring. This illness — whatever it ends up being — is making me live in the present. And isn’t that the best gift?
Now, feeling the wind on my face is magic. Green plants. My feet on the pavement. A dog running beside me. A sunset. Cuddling. Tummy-aching laughter. My feet in the sand. The sun on my back. The smell of saltwater.
Every day has become a blessing. Even when my face is burning and my tongue is numb and I can’t remember the goddamn word ‘Ireland,’ I’m reminded to go outside for a run, eat food that’s good for me and appreciate the simple things that make me feel alive.
I want to use my life to help make others feel good too. I started my work as an escort because of my illness, but I’m continuing it despite it. I want people to see that you can be disabled and a sexual being at the same time. You can wake up and feel like shit, and end the day feeling on top of the world with three orgasms down, a wad of cash in your bank account and having made someone else’s day. Because you never know what someone else is going through as well.
Hayley Jade is a sex worker, disability advocate, non-fiction writer, and dog-lover.