Me with my walking stick
I feel like the more and more I seem to open up about having invisible illnesses, the more 'advice' people will try to give me, which often then makes me zip my lips as I feel like there is no point anymore. Unless you live with someone who has a disability, chances are you have no idea what it's really like.
I have Ehlers-Danlos Syndrome (EDS), Fibromyalgia and Postural Orthostatic Tachycardia Syndrome (POTS). I have the Hypermobility type of Ehlers-Danlos Syndrome but I will briefly explain what that means and then explain why the hypermobility and fibromyalgia sync together. EDS is a connective tissue disorder, meaning that my skin, blood vessels, ligaments, tendons, internal organs, bones, etc are affected by it. It's a genetic condition, so you either inherit it from a family member (which we're pretty sure is my Dad since he is showing a lot of signs of having it) or a mutated gene. Currently, the medical world have not discovered the specific gene in the hypermobility type and there are various tests that I've had to go through to be diagnosed. Although EDS has been recognised for decades, there are some people in the medical field that are dismissive of this condition as most symptoms are 'invisible' and especially younger women are believed less which is so frustrating. My Dad was sent to see a geneticist who simply told him that she didn't believe in EDS.
With having the hypermobility type, my joints subluxate easily. They move around but don't fully dislocate, and since this is often invisible to the eye, a lot of people simply don't believe me when I say it's happened. My other symptoms include joint pain, extreme fatigue, digestive problems, migraines, IBS, nerve pain and other horrible symptoms. In another life I'd be a great gymnast but unfortunately, it brings a lot of negative things into my life.
Annoyingly, sometimes to rectify problems, for example going to the dentist (I'm not even going into dental problems people with EDS have) you need to have a local anaesthetic. People with EDS seem to metabolise this quicker than the average human, often making us need more of it or a stronger dose. A year or so before I was initially verbally diagnosed, I had a filling and the anaesthetic pretty much didn't work at all and because it was a rushed appointment, I felt the whole thing. It was so painful that I was so close to passing out and could feel myself slipping and couldn't do anything about it. I'm not going to lie, I've never been back to a dentist for fear of things like this happening again.
People assume that if you're in pain that your joints are stiff. Often with me, this is in fact not the case, as I'm really bendy and don't need to stretch the joint out. Most often my pain is due to joints moving, muscles seizing up with Fibromyalgia or nerve pain. I've managed to decrease my nerve pain in certain areas, like in my arms and wrists through using Gabapentin. I feel like this medication has genuinely saved me since the pain was like lightning bolts going through my veins and simply cannot use my arms or hands in such pain. It is completely debilitating. Luckily I don't experience this as much now but I still have nerve pain in various other parts of my body.
With fatigue and insomnia, the number of times I've heard people say to me that I just need to go to bed earlier, to switch my phone off, to simply try harder to go asleep. There are times that I've been exhausted and have still not slept all night and had to power through the entire next day on no sleep to the point of nausea. I can sleep for 12 hours a night when I do sleep and still need to nap the next day. A routine does help and I go to bed and get up with my partner, but some days I can barely stay awake. It's things like this that prevent me having a job outside of my house, as I'd forever be calling in sick to say I'd had no sleep and can't function, or I'm in too much pain to get ready never mind leave the house and do an eight-hour shift. I grind my teeth in my sleep too, and last week my jaw seized almost completely shut, gave me an intense migraine and I couldn't eat solid foods and had to awkwardly whisper the entire evening. How would that possibly work in any job? Sorry boss, I'll have to write on a whiteboard instead of talking, not communicate with anyone else, close my eyes for the rest of the day and get nauseous because I can't eat and only drink water.
I've been told that if I need to sit down all day then an office job will be fine. Aside from the fact that I'm sick to my teeth of being given 'advice' that is basically a demand, an office job is not 'fine'. I can't drive, and public transport is still not great for people with disabilities. Depending on where I'd work, it could take me over an hour to get somewhere in my city due to walking slow, difficulties with using transport and stopping for a sit-down. This is where it's confusing some people. 'If you need to sit down, just get a taxi to work then sit down all day in an office' they say. Most days I need to elevate my legs as I get a lot of pain in them. The muscles hurt and my knees are so dodgy that often they subluxate and I need to wiggle them into place again which hurts so much. I get back pain and often need to lie down flat to alleviate some of it. I get migraines if I look at screens too much or if I'm in a noisy place. I had to leave my future Father-in-laws's wedding early last year because the laughs from the speeches and the lighting gave me a huge migraine.
As a kid I was always the one out of me and my brother to catch illnesses. I'd regularly hurt my ankles from over-pronating but since it seemed so often I didn't bother telling people and would limp around school. I've noticed now, that if my partner picks up a cold or something else from work, I seem to catch it and have it for weeks. Two years ago I got a cough in the first week of September. Two weeks later I flew to Poland and once I landed I needed throat sweets to numb my mouth and throat, otherwise, I'd have a coughing fit and my inhalers were useless. The day after I landed home I felt really ill and a few days later went to the local Walk-In Centre. I was told I had a virus and it should be completely gone within ten weeks. Well, it lasted 12 and it was the most horrendous time of my life. I would choke constantly and need water almost every five minutes. I was throwing up multiple times a day and anything that had crumbs, spice or a thick sauce made this multiply. I felt like a couldn't breathe but my sinuses were clear. I wouldn't wish half the experience on an enemy. It was right at the time that all the family and friends birthdays popped up and I even got engaged in this time as it was on the last part of the illness. We went away for my birthday and I knew Andy had brought the ring (see more on this here) and I said to him listen, I know you were going to propose at my favourite castle, but please don't. I was throwing up constantly on that trip and I knew I wouldn't get to experience how magical it felt. I booked us a trip back to Newcastle where we met purely so he could propose two months later as I knew he'd love to do it up there and although I was still ill, I finally got to have a nice time. Can you even fathom how horrible the entire autumn and part of winter was being so ill, and having the other problems I have too?
My partner pushing me in my wheelchair
Another huge misconception is that you have to be paralysed to be in a wheelchair and therefore you shouldn't use one if you can walk and that also means you can't use disabled toilets. First of all, ambulatory wheelchair users exist. People may use them to prevent fatigue, injuries, flare-ups, and pain. They may also use other mobility aids for these reasons too. The number of times I have used a wheelchair for these reasons and moved my legs and the looks of horror I've received is honestly ridiculous. You know what type of people don't do this? Children. It seems to be the age category from my experience of roughly 40-70 where people look at me rudely. People closer to my age and children really don't seem to care that often. I do get people walking straight past me and their bags hit me in the face. They hold their cigarette close to their leg in between puffs so the smoke goes straight into my lungs and as someone with mild asthma it's not that nice. People have tutted if I'm coming down an aisle and it means they need to move slightly so that I'm able to come through and they can get down the aisle. I've had people only talk to my partner because they wrongly assume I can't communicate. People have seen my engagement ring and looked so confused as to how I could possibly have someone who loves me enough to marry me, then I can see their mind wandering, almost confused as to how I'd get down an aisle and how I'd possibly wear a wedding dress. The only way to fight this seems to be smiling and being polite. I don't have the energy to almost have to prove my disability to people anymore. And currently I don't even have a blue badge so it's dangerous even getting in and out of it, but I bet if I do get one in the future I will no doubt be left with horrible notes on the windscreen telling me I don't look disabled. Going to the toilet is awful too. In Manchester recently there were locked disabled toilets, lifts not working, doors labelled as disabled toilets only for them to have a changing mat with no toilet in. Also, the key thing is that you need to scan to open it or get a member of staff to open the door. No automatic opening, so by yourself it's hard to get in and out of the door. How are disabled people supposed to be more independent if there are multiple obstacles we are supposed to get through just to do things abled people are okay to do like use a toilet?
There is a stigma too about using painkillers. First, I've been told by people with little or no medical experience to just take some paracetamol and ibuprofen and my pain will go away. They don't work on me and despite me saying this I'm often not believed. I'm currently using Tramadol for pain prescribed by my amazing GP, only after trial and error of lower strength pain medication. I have to go to appointments for pain management basically to prove I'm not getting addicted to it. People sometimes don't believe I have pain if you can't see where the pain is. Often I get told that if I exercise my pain will go away. Even though they know all the rest of the symptoms this is what I'm told, and it's frankly not the truth. And because I'm overweight this is the default response and it is infuriating. You know when I turned overweight? When I started to experience all this pain to begin with and my GP seemed to think stress is what caused it after numerous tests. Not because I over-ate. Not because I got lazy.
Stress is what triggered the Fibromyalgia and basically ramped up my EDS symptoms that I had been brushing off all of my teenage life. With Fibro I get widespread pain which consists of burning pain, stabbing pain, aches and more. Most of the time it affects my back, legs, arms, and head. I also have increased sensitivity, so this includes light, heat and sound. It brings fatigue and poor sleeping. It brings cognitive issues known as fibro fog or brain fog, so I forget things easier compared to when I was a teenager and I find it incredibly hard to concentrate. I can't control my body temperature sometimes, so I can go really hot and really cold quickly, or some parts of my body are so hot and others feel freezing. It can make you feel really nauseous and irritated. Periods are a big issue too. You get period pain, which flares up your Fibromyalgia in the hips, legs, and back. Because I also have lower back pain due to EDS, this is amplified and I am in horrific pain. For these reasons, I take multiple contraceptives supplied by said amazing GP to stop me from having periods.
For these reasons I genuinely believe most abled people simply have no idea what we go through. In my eyes, I don't have it anywhere near as bad as others, and I know not to compare apples and oranges but if all of this happens to me, it must be dreadful for people with fewer abilities than me. How people expect me to live a normal life and have plenty of children and hold down a job is baffling. With EDS I have a 50% chance of passing this on to a child, regardless of the god-awful symptoms and experiences pregnant people with EDS go through. I've discussed why holding down a job is too difficult and that's why I work for myself from home. I'm judged constantly by people for not being able. People don't understand why sometimes I can't attend social events, be out and about for a whole day or even the simplest of things like look after myself. My partner sometimes has to come home from work earlier or use his holidays to help me bathe, feed myself and more. I lost all dignity with my disabilities and I'm glad my partner is so understanding. Without him, I don't know what my life would be like. I wasn't disabled when we began our relationship so he has been through this whole experience with me. I've learned to only see a small group of people now due to prejudice and lack of understanding. I often leave fun activities and family gatherings in a ton of pain. How do you explain this to a perfectly abled person?
The thing is, often for people to understand what it's like, they either have to experience it themselves or be close to someone else going through it. I'd never want anyone else to feel the way I do. There is no cure for EDS, and while Fibromyalgia is also only confirmed by certain tests and not genes, I have a double whammy of conditions that are not understood properly. I might have even more conditions in the future, and heart problems are a particular one I'm worried about as I often have palpitations but they aren't bad enough (along with other symptoms) for me to have POTS (Postural Orthostatic Tachycardia Syndrome). I went through this journey mostly through university at first and had to fight tooth and nail to finish my degree even though I couldn't possibly use it in a career as I'm in too much pain to be a solicitor like I had planned.
The day someone other than my partner fully understands and accepts my disabilities will be a miracle.
