Wellness Weak
It all started with a headache. I was four years old, pulling at my hair with frustration in pain. How were my parents supposed to assure me that I wasn’t dying? Everyone in the doctor’s office let me go in ahead of them and with one look at me, the doctor confirmed that I was experiencing a migraine. My dad suffers from migraine so it was put down to genetics and this was likely to continue. I was sent home to put an ice pack on my head. We didn’t have one, so a push-pop had to suffice. I think this is my first real memory.
When I was fourteen, the heaviness in my periods was not letting up. I was bleeding excessively and with growing frequency. After a series of blood tests, it was discovered that I was severely anaemic. After that, they discovered I had coeliac disease, through malnourishment. After that, it was hashimotos thyroiditis. At 22, it was chronic migraines. Coming up to a year ago now, I had dangerously high liver inflammation and through more meds and tests, we’re still trying to figure out what caused it. I feel like a mismatched jigsaw puzzle every time I sit opposite a doctor. I log my symptoms. I take my medicine. Why am I not better?
Getting a new diagnosis is never easy. Healthy people see it as a positive thing . They’re not entirely wrong, but it’s also very important to grieve a portion of yourself that has been lost to pain and discomfort. I feel like I am living my entire life with terms and conditions. What I once watered down to a party trick of listing the amount of things wrong with me, became a dark cloud of embarrassment and something I never really came to terms with. I let so many people around me think it was okay to make jokes at the expense of my health — save one joke about ‘GF’ meaning girlfriend, and not gluten free, none of them were actually funny, but I accepted it — I set back years of mental progress around it because I so desperately wanted to be seen as normal. All I had in my life was people telling me how natural it was to use humour to cope — I don’t think I actually realised that allowing yourself to feel remorse was another option. I always feared making others uncomfortable by talking about my health, but lately I’ve come to terms with the fact that my pain is more important than their discomfort.
Being sick manifests in many ways past its physical forms. The pain, nausea, reactions to new medication, the money, the shame, the grief, and flare ups are a massive part of it, but I often find the small moments in life surrounding it to be the hardest.
It’s the laugh along with your doctor when they exclaim “oh, you’ve had a rough few years, haven’t you?”, the sadness when people meet your vulnerability with the crass, “God! What isn’t wrong with you?”. I’ve felt so much guilt around making light of the way my body works — I was betraying my own trust, but I am so afraid of rejection. And, I know that these are topics that are uncomfortable for another person when they don’t understand it. I know nobody wants to be having this heavy of a conversation outside PMACs, but It’s also incredibly taxing to have a stomach ache outside PMACs. And at home, and at work, on the bus, and when with friends, with the person you fancy, and every other moment. I wish people wouldn’t ask if they weren’t willing to listen and give consideration. I don’t need your condolences.
It’s the disclaimers if you find yourself close to another person. You hope that they won’t hear your gastrointestinal tract breaking down anything you put in it that day. I’ve never felt like I had much ownership of my body since all it’s ever done is actively work against me and I found it hard to see myself in any sexual way. I live in constant fear that I’m missing something wrong with me. Since my general default is feeling unwell, I’m afraid that I won’t notice I have some incurable illness and I’ll die before it’s too late. It’s felt as though I’ve given up my bodily autonomy to blood cells and I live with this giant ticking clock in the back of my head at all times.
I resided in the fact that I would rather go hungry if it meant I got invited. I’d sit in the sun and then resort to my dark bedroom for two days, wearing a hat made of ice. Early into knowing someone, I would give them a quick rundown on everything related to my health, so they knew what they were getting involved with. I wanted to show the parts of myself that I deemed least desirable and see if someone would still choose me. I grew so scared of asking for help and didn’t allow myself to trust in people to do that for so long. Most people always pose the question of “Can you die from it, or do you just get sick?”, as if they are the only two options. When I knew I could survive, it didn’t feel like I should really be placing that much weight on it — no one else was. Still though, I was never really living.
I get so angry in the summertime. A season meant to be filled with ice-cream and beach days become overwrought with pain and anxiety. Since I was very young, the sun was the biggest trigger for my worst migraines. I’ve felt like I missed out on so much in summer. Never being able to keep up with my peers has left me with this great sense of disillusionment to rest. In the 3-month break I was awarded from life, I felt the most tense. I fear people leaving me behind or giving up on inviting me to places because of how the weather may influence my choices, but I don’t want someone to make that decision for me. My whole life, I’ve felt like I was in constant competition with the sun and begging for attention. I was born from the rain. Nothing brings me a greater sense of comfort than an overcast day, but I want to be included and I am sillily afraid that others will think I am unlovable because I cannot sit in the sunshine for a long time.
It took me until the age of 20 to actually cry over the fact that I was sick. Six years into this journey, and I never let myself feel it once. I was on a trip in Galway with some friends, most of whom I wasn’t close with, and we took a day trip to Inis Mór. It was a gorgeous, sunny day and we walked around on the beach, got in the sea and then we rented some bikes to cycle around the island. Ten minutes into the uphill cycle, I got the first signs of a migraine. I got off my bike and begged for everyone to go on without me, getting angry at their positive affirmations that “I could do it!”. I told them I just needed to take a break and sit in the shade for a few minutes. Everyone cycled off and I rolled down the hill, bought some water and painkillers, and found the nearest shade. I sat there for almost 2 hours. When I got back to the hostel, I broke down in front of my friend and in that moment, it really sunk in how much I have had to give up in spite of my health. I was so ashamed, and I became so frightened that this was my life.
Allowing someone to see that side of me is one of the most terrifying things I’ve ever done, but it began to open me up to how great people can be. I’ve always been a positive person when it comes to my pain — responding with “It’s okay!” when someone apologises for all I’ve gone through — but it took someone saying “it isn’t, though” for me to realise I didn’t need to be this beacon of hope, entirely for other people. When people have asked me what I would look for in a future partner, I’ve said “I just hope they’re respectful and take time to care about my health problems”, as if that shouldn’t be the bare minimum. I am not my illness, but it is a massive part of my life. Lately, having people around me who check in that I’ve taken my medication, do research into restaurants I can eat at, ask me if the music is too loud, and recognise how exhausting it is to live how I do has meant the absolute world to me. I will never get used to the feeling of being cared for. It’s something that continues to excite me every single day.
There are times when I feel guilty about having a good day. I’m worried that people will think I’m a fraud, and fear when I’ll have another good day again. It’s a feeling you don’t particularly notice until it’s gone, and you realise you haven’t needed a panadol in a few days. I compare myself to other people with chronic illnesses a lot. I constantly think that there is no reason I should be complaining about anything, since I can still go about my day most of the time. I think that’s a common feeling though — you’re always going to believe that the next person is sicker than you, because everyone has always made your health seem insignificant. They call it an invisible illness for a reason.
Allowing myself to be closer to my emotions has allowed me to be more in-tune with what I need when it comes to my health. I’ve come to terms with the fact that there is no cure for any of the conditions that I deal with on a daily basis, and they will be factors of my life forever. I know that the world won’t wait for me, and I know that it’s not built for sick people. Ultimately, I like who being sick has made me. I am more empathetic towards myself and others. I know I am so much more than a sick person, and I have a lot to give. I just want other people to let me.
