Mourning my Health, as a Disabled Person

I did not expect to be hit by such a wave of sadness when thinking about my health. I have been disabled since I was very little, diagnosed with Ehlers-Danlos Syndrome when I was seven years old. But that is normal to me. Ehlers-Danlos is a multi-systemic connective tissue disorder that is caused by faulty collagen. Connective tissue is comparable to the glue that holds your body together, and is in skin, tendons, ligaments, blood vessels, internal organs and bones. My whole body has been affected by Ehlers-Danlos. 

My mother could probably reminisce on a time before we knew what was wrong with me; a limp in PE, or ‘clicky hips’ when I was born. She called me ‘flopsy bunny’ because it was a given when I couldn’t hold myself up, or when I was clumsy, it has always been our normal.  My mother is also the person you would speak to if you wanted to know anything about my diagnosis. My memories before diagnosis are vague, a referral to physiotherapy and hydrotherapy, pain, my feet in plaster for insoles, trips into central London to see the experts in a condition that was rare, but people were learning about.

It used to be that Ehlers-Danlos was something doctors had never heard about. I would have to explain the condition to them. Now, its common to hear from the junior doctors that ‘I know it’s a connective tissue disorder, but I’m not sure how it affects you’. They’ll often look it up. I heard that one a lot in the hospital, but I see it as a step of progress that a lot of doctors are now aware the condition exists, even though they may not know what exactly it is.

My Ehlers-Danlos affects me in many ways that we mostly know how to control; chronic pain, fatigue, bendy fingers and a lot of dislocations that I pop back in. I often forget how many symptoms I actually have, often masking the chronic pain. Who knew it wasn’t normal to have pain all the time?

One memory sticks out to me. My boyfriend is a first aider, but this is a common reaction. It was our first long car journey and after shifting in my seat, I dislocated my shoulder. When I get a dislocation I out of habit say it out loud, and begin manoeuvring myself to pop it back into place. My boyfriend immediately pulled the car over and asked if I wanted to go to the hospital. Can you imagine that, hospital for a dislocation?! I would spend every day in A&E, silly. No, I can pop it in, easy.

The point is, I manage my condition as best I can, and it often works. There are times I struggle, mornings are often hard, and I come home from two hour lectures and often have to have a nap, but this is my life, and has been my life since I was seven.

My life has changed these past few months. In October 2018, a family emergency happened while I was in the middle of my midterm assignments. I became extremely stressed, and a few weeks later, deeply unwell. I began constantly feeling sick, I would end up in hives after going into other environments, I struggled to digest food properly, and after a while, I started having weird bathroom symptoms. Blood, urgency, and heading to the toilet upwards of fifteen times a lot of days. I became so ill that I ended up staying in hospital two days before my first second year exam. Needless to say, my grades were affected. I became so ill because I was awkward. I knew something was deeply wrong, but I didn’t want to tell a doctor about literal shit. I tried to work out what was wrong myself for three weeks before I considered going to a doctor. Then the diagnosis process takes a while, a colonoscopy? We have an appointment mid-January. Unfortunately, being made to stay in hospital was the best thing for me. I had a flexible sigmoidoscopy, which is like a colonoscopy but on a much smaller scale. It didn’t show much. I had a colonoscopy at home, away from university, which showed patches of Colitis on the other side of my colon, close to the small bowel. That’s strange. Colitis would often show up in a sigmoidoscopy. Never mind. That could be treated with medication when I got back to my consultant. I was put onto mezalasine, a type of medication that doesn’t really help Crohn’s, but is great for types of Colitis. I became sicker. The nausea was much worse now and the fatigue was getting worse too. I wasn’t able to get to my lectures even though they were minutes away. Then, two weeks ago, I was admitted to hospital again.

I had pain. A lot of pain. Radiating in my side and back, and down my leg. I sat up from my bed. Became lightheaded. Realised that if I moved I would pass out. I lay down, and the acid reflux hit me. I was vomiting, shaking, dizzy. I had no idea why. I had just been started on oral steroids, but this couldn’t be side effects. My mother was visiting me that weekend, and was due to leave the city that day. She stayed, and took me into the GP. The GP phoned my consultant, who advised that I should be admitted immediately. I went to hospital.

I was treated with IV steroids for six days, longer than the usual period of five days. I was given another colonoscopy. my diagnosis was changed. My new symptoms have been Crohn’s all along, and Crohn’s affects your whole digestive system.   I caught a UTI due to my immune system being supressed. That extended my hospital stay. I developed fecal impaction. That also extended my stay. I had an MRI. I had an allergic reaction to the mannitol drink. I couldn’t eat, sleep, and my pulse. wouldn’t. slow. down. I woke up in tears from the pain. I couldn’t have strong painkillers because that would make the fecal impaction worse. They decided on a treatment plan; Azathioprine, an immunosuppressant. My blood results looked good, I could handle it. Nope. I had a reaction to the azathioprine and woke up vomiting. Switch to another.

All in all, it was a pretty traumatic experience. 

And here I am. 

Processing it all.

And I am sad.

I’m mourning my health. I wasn’t the healthiest person to begin with, and certainly my adjustment process isn’t the same as a healthy person who has to adjust to a lifelong illness. But I have still lost my normalcy. I am taking thirty tablets a day for Crohn’s alone. This will definitely reduce- I am on a steroid taper, meaning that seven of those tablets are Prednisolone, a wonderful drug with awful side effects that includes osteoporosis, which I am already at greater risk of developing due to my collagen-less bones, and eating too much food. It also involves water retention, ‘moon face’ [think chipmunks] and acne. My appearance is not its best. It also makes your pre-existing mental health conditions worse. And makes you very snappy. The list of common side effects is extremely long.

I am sad because my normal was not thirty tablets a day. I am disabled, but I was coping. I am sad because I am so exhausted. I am sad because on top of my multi-systemic connective tissue disorder, I now have a multi-systemic inflammatory condition too. As if I needed anything else to go wrong with my body. I am also sad that my connective tissue disorder is probably making it easy for my Crohn’s. I’m sad because of the effect my illness has had on those around me. Turning my boyfriend into a carer while he has assignment deadlines and a whole heap of normal university stress, snapping at my mam down the phone when she takes too long to say something; my medications have really brought out the worst in me.

I am also sad because I was doing so well at university. I was working at a steady first, getting As and B1s in my assignments. For the first time, I felt settled, smart, and enjoyed my law degree. If I can say that. My modules were going really well. And now, I can’t bring myself to read. Do I want to be a lawyer? Can I be a lawyer? Do I feel like this because I feel run down or have I discovered that I just hate the law? I didn’t hate the law four weeks ago. I am sad because this discussion has to be had.

I have discovered that this is okay. Or I’m coming to that point. I have to give myself the time to be sad about what has happened. I’ve spent a lot of time worrying about my health over the past six months and now that we finally have answers and a treatment plan that’ll work, I can calm down. I am allowed to be emotional about something that is changing my world, that meant I was poked and prodded with needles every day for two weeks, that meant I had a camera up my bum. My bodily autonomy has been, not violated, but, changed by my new illness. I have had very little privacy, spending most of my time on a six bed ward, watching the elderly ladies around me sleep the day away. I had one night of pure joy that was a side room with my own toilet. When I was moved away from the gastroenterology ward onto a general medicine ward due to a lack of beds, and I was frustrated because I had been in hospital for so long, three new elderly ladies had to watch me cry with the healthcare assistant patting me on the back, though one lady did get the nurse to offer me her copy of Hello Magazine to cheer me up.

I’ve spent a lot of time crying recently. The stress I’ve felt has been immeasurable. Those around me have had a lot of stress. I feel like a burden sometimes, even though I try not to be. I still have things to work through. 

It is okay for me to cry. I think I’m over it, but I needed to cry when I did. 

Life with a chronic illness can change at any moment. It is unpredictable. You get used to some symptoms, but others might pop up. Some things may go away. You might get diagnosed with another chronic illness. You probably shouldn't be upset at the world forever when it happens, but the world can forgive you some time to process the fact that things feel absolutely terrible and unfair. It is lifechanging, regardless of the fact you are already ill.

To stop feeling useless, I set up a Facebook fundraiser for Crohn’s and Colitis UK. I wasn’t expecting to meet a £100 target, but I’ve currently raised just under £300. It’s not much, but it covers the £15 membership fee I didn’t have to pay because I’m a student. CCUK has been a major source of information and comfort for me. The link is still active: Check it out if you can give anything.