Messages from the Senior Team

Hey guys, so excited about the new season and the new issue 99! I am really excited about not being absolutely freezing all the time! We are wanting to say a special think you for the stunning illustration done by D. Pryke Thomas it's so beautiful and we absolutely love it !!!

And a thank you to all our designers who worked really hard to make this issue be possible. You all did a fantastic job, and we really appreciate the work you do on each and every atrial. As we are cooling down from this issue, we are also so excited for the 100th issue as we are planning on making it our biggest and best issue yet and want to celebrate not only with the ball but with a special cupcake day for our creatives!! See more info in the back xxx

- Katy & Fiona ❤

During my first week at university, I decided to get a head start on my reading in one of the beautiful gardens on campus. Halfway through chapter four of Dracula, I found myself semi-conscious on the grass and one of my flatmates had to come and help me get back to our flat safely. A few years before, my aunt, Janet, collapsed in the staff bathrooms at the University of Manchester and couldn’t get up. Around an hour later someone found her. Chronic illness runs in my family, Janet has chronic fatigue syndrome, my mum rheumatoid arthritis, and I have endometriosis. Living with a condition that impacts your dayto-day life, and that cannot be stopped, is very tricky. Getting recognition of these invisible conditions is particularly hard, despite the fact that they’re not uncommon at all: around twenty-six million people in England suffer from at least one long term condition.

about [her] condition, as most of them have no education on ME and assume it’s psychological. At some point, [she] asked for help from a GP and he referred [her] to the nearest ME/CFS service in Sheffield. This ‘service’ offered no medical diagnosis or treatment and wouldn’t even help with benefits claims.”. She was eager to get something solid down on paper to show her employers that she really wanted to recover, but she turned up to courses for living with ME just to find out that it was ‘psychological treatment’, that classed ME as hypochondria, which would be jotted down on her medical records.

I spent hours in doctor’s offices answering questions, getting prodded and poked, being told to swallow whatever pills might make the unbearable pain go away. Nothing worked. After I finally convinced my GP that I wasn’t pregnant, I didn’t have any nasty STIs and that my tolerance for gluten was in-fact totally fine (I had to cut out pasta and bread, it was the worst fortnight of my life), she said that she was stumped. So, I started doing some Googling and found articles and blogs with symptom descriptions that matched my own.

Janet found that her experience with autoimmune disease highlighted this, as they disproportionately affect women. “MS [multiple sclerosis] was called ‘hysterical paralysis until the advent of the CAT scanner, and was ‘treated’ by psychiatrists until the 1960’s. The battle to have the PACE trial discredited took enormous amounts of energy from a patient group who didn’t have energy to spare.

Endometriosis effects around 10% of women globally, yet I had to jump through hoop after hoop to get listened to, and, after having my pain and feelings brushed aside for the better part of a year, my doctor caved and gave me medications that would help me get by. Many chronically ill people, unfortunately, have a similar experience when getting diagnosed. My aunt (Janet) went through a similar process when trying to get a diagnosis for myalgic encephalomyelitis (ME). She said that she has “learned over the years not to visit GPs seizing up, face masks with cold gel beads for migraines, an Apple Watch to track heart rates, do ECGs, check oxygen and track medication, compression leggings to keep their blood “movin’ and groovin’”, over-ear headphones to block out sounds as their fibromyalgia causes heightened sensations, and a slew of pain killers. These are all things that Vee has said they often forget aren’t required by most people to have a semi-normal life: they’re just things to help them get through the day.

People with ME are still being discredited by some of the PACE authors like Simon Wesselly, Michael Sharpe and Trudy Chalder, who describe us as ‘activists’ and luddites, who just won’t accept the science.”. With chronic illnesses, as well as women’s health issues, there are too few specialists, and research isn’t being done to find something that will help, if not cure.

I take anti-inflammatory medications and codeine three times a day, as well as some classic paracetamol and norethisterone when I have big plans, and these have somewhat improved my quality of life. But, I still end up feeling sick, tired, confused, dizzy, and many more horrible things whenever I have to take the meds. Plus, they’re not one-hundred percent effective and I usually have to stay in bed anyway for fear of putting myself in a dangerous situation. Such as, in December of 2021, when my side effects mixed with intense pain were so bad that I threw up and fainted outside of The Body Shop (I also knocked a display over on my way out of the shop. So to whichever poor employee had to pick it all up, I’m so sorry).

Along with cancelling plans to stay home despite taking enough meds to fill a maraca,

My friend, Vee Marston, puts my short list of medications to shame. They have fibromyalgia which causes pain throughout their body, fatigue and insomnia. They said, “I take a nerve blocker which helps me basically get out of bed and function. I also take a medication to ease the nausea that comes along with both taking the nerve blocker and having the condition that I have, and I take a beta blocker which helps keep my heart problems in check. I also take supplements depending on what time of year it is and what thing I’m deficient in... but sometimes they’re gummies and that makes me feel better.”. This comes along with a foldup walking stick and a ‘fancy’ acrylic stick from Neo-Walk to help them get around, as well as stick on heat pads to help ease any join pain in specific spots, a rollator which allows them to walk faster (“I am a homosexual, I must walk fast!”) and avoid developing a limp from the stick or having to lean on a stick with sore joints, knee supports to help with stability, compression gloves to stop their fingers

Janet, however, has said that she found that the hardest thing to do was, “to accept that increasingly large chunks of my life – and who I was – had to be left behind. This process takes years of fighting, mourning, trying to bargain with life to leave me something of who I was, until finally coming to the realisation that it’s better to have a minimal life and feel well than to try to cling on to things that you just can’t have.”. She loved walks with the dog, kayaking, working, teaching, and, still is, a fantastic artist. It’s hard to live feeling that your body hates you, and pushing aside the things that you took for granted for so long, because an illness won’t let you do them, feels like part of you is dying and will never come back. The realisation that this is not something that will simply go away with some time and some Calpol is a bitter pill to swallow.

Design: Katy Blair

Safe spaces have always interested me, and I find that mine are my lovely little flat or the passenger seat of my girlfriend’s car. I feel like nothing bad can happen here, even if I’m going through the worst time, because I can lie down and not have people staring. My medication and hot water bottle are there and 111 is just a quick, embarrassment free phone call away. Janet’s safe spaces are her bed and bath with the curtains drawn and the lights off so she can try and relax. Finding the places where you know you can just be is so important, it allows a slight sense of freedom within a space. No one there will judge you or say that you are being hysterical. Help will be around if you need it and there is no obligation to do anything that you feel you cannot do in that moment.

So, there we have it. If you feel like being dismissed by doctors, pumped with medications and developing fears of certain spaces, chronic illness might be for you. Truthfully, when you’re around people who try their best to understand and actually help you out, it can feel a lot better. Understanding and consideration go a long way, so please keep that in mind next time someone has ME brain fog, fibro slow walks, endo dizziness or any number of symptoms caused by invisible health problems. And, for God’s sake, don’t grab people’s walking sticks!

Spaces that we don’t like? For me, anywhere further than a 5-minute walk from my flat on a bad day. I like to know that I can get home quickly if I’m feeling particularly sore so that I don’t pass out. Vee doesn’t go to supermarkets because they can’t balance on their stick with shopping bags, they avoid buses because people say horrible things to them or try to take their stick away when they sit in disabled seats, and childhood places of comfort because they’ve been taken over by anti-vaxxers and “NO MASKS ALLOWED” signs since the pandemic. Janet finds it hard being places that are noisy and busy or spaces with fluorescent lighting. She spoke about how she often finds that there is too much space; her walking and balance was affected when she was severely ill so she would always try to walk near a wall for support in case she keeled over.