My personal life is something I’ve always kept fairly private but in the world of social media sometimes this can skew the view of what it is like to be in a relationship whilst being diagnosed with a chronic illness. For the readers who are looking for the drama, this isn’t going to be a post for you. This is for anyone who has felt that their or their partner’s illness has had an impact on their relationships and felt alone and unable to speak about it. My personal experience doesn’t speak for everyone with a chronic illness but relationships and chronic illness are a tricky balance whatever the circumstances so I wanted to share a little of my past and my hopes for the future. So here’s a ‘Shout Out To My Ex’ and a letter entitled ‘Dear Future Husband’ as I find myself single and chronically ill in the middle of a global pandemic.
I was with my Ex-boyfriend for almost 6 years. We met when I was a very different person. We met in a club, I know, almost laughable now. We met before I was unwell and had a magical 6 months, which I can barely remember, where I was healthy. Then the headaches started and, if you are a regular here, you know the rest of the story with my health.
I’m not 100% sure exactly when we lost ‘it’. But what you probably don’t know is that this is the 5th or 6th time we’ve broken up over the past 3 years. I want to share something I wrote but never published from a break up in March 2018. I know we had other problems but at the time one of the main things we argued about was my health. I called the piece ‘In Sickness & In Health:
‘You’d like to think that if you can get through the hardest days with someone, if someone has loved you unconditionally having pushed you around in your wheelchair, lifted you out of the shower and picked you up off the bathroom floor, that they’ll always be there, especially when you started to get better, right?
When I realised in early 2016 that most of my health issues over the previous 18 months were incurable and genetic I gave my boyfriend of 2 years the classic ultimatum: If you want to leave now I wouldn’t blame you for a second. And I wouldn’t have. This thing, this illness, happened to me. Not to him. I didn’t have a choice in my diagnosis or where that left my future, he did. But he made the choice to stick it out. Like most noble (and foolish) gentlemen. And over the next year as my health continued to deteriorate, I continually told him it was okay if he wanted to run. When we started dating I was an 18-year-old college student who played badminton and football and could dance the nights away. No one could’ve guessed the path life would take. Me throwing up in restaurant toilets and organising dates around hospital appointments was not what he’d signed up for. It wasn’t what I’d signed up for either but my body was the issue and, irritatingly, it’s not something I could run away from.
Turns out he cared about me and this broken body of mine and he stayed. He stayed through the surgeries and the sleepless nights and through the countless times I screamed, cried and begged for him to make the pain in my head go away. Looking back it was obviously hard on me but it must have been pretty hard on him too.
After I’d recovered from the ‘4 surgeries in 5 months’ saga of 2017, I was starting to get better and things were starting to get easier. I guess it was about here things started to change. Things were just different. I was getting better and stronger but we would see each other and do fun things less and less.
I know what you’re all thinking. ‘Didn’t you go back to university? Some people can’t handle long distance.’ And don’t get me wrong the distance was tough, but we’d done it before, for over a year. We knew we wouldn’t see each other as much as the first time around but we had a plan in place before I left. But the hour-long skype calls of years gone by turned into 3 minutes on the phone.
Whilst my parents and new uni friends were noticing huge changes in my health and abilities, he never saw it. I came home to perform for my old stage school in February, an enormous achievement for me, and I wanted him there to see me sing and dance on stage for the first time since we had met 4 years before. And he came, but instead of telling me he was proud of me or being amazed that the girl that could barely walk the year before was dancing (for 3 minutes before POTS attacked backstage), he said nothing. His only comment was on the quality of the kids before me, oh and the lighting.
He decided not to come and visit when he said he would. We kept arguing over the phone. I told him I couldn’t keep putting in the effort for the both of us and it spiraled away into the same argument that we would have over and over. And then he brings up my illness. He spoke about how hard he found it, when he didn’t speak up at the time and we should’ve been working through it together. He talked about not being able to do things and go to places because of me, when he’d never even suggested things for me to make a judgement call on (There’s not much that I won’t at least give a go). He started chatting about how frustrating my walker is, even though he took my point that without it he’d still be pushing me around. He would never like me using any of my mobility aids and always wanted them out of the way for pictures. It got to the point where he didn’t even like me wearing zebra print. He was embarrassed.
Part of me reckons that he still thinks I am much sicker than I am, because why should this all come out when I’m so much better. But part of me also wonders whether he thought I would be ‘fixed’. The surgeons, physios and doctors would click their fingers and I’d be back to the girl I once was. I have wished for it to be that simple for a long time and I’ve been working my butt off to live a ‘normal’ life but I’ll never go fully back, it’s just not how things work. Maybe the real reason is something completely different, though I’m not sure if that’s better or worse.
He will always hold a special place in my heart for holding my hand throughout my sickness, It’s just a shame he couldn’t have stayed and enjoyed the ‘health’.’
It took me a long time to be proud of my achievements, use my mobility aids with pride and be the confident #babewithamobilityaid that I am today, so for the person closest to me to make me feel bad about that was heartbreaking. He always wanted to be on the go and doing things and I just couldn’t keep up (I have no idea how lockdown has suited him but I can’t imagine it went well). But because I wanted to save what was hanging on by a thread I’d fold my stick up in my bag as soon as I was with him and go on the ‘adventure’ even if it was just a trip to a shopping centre and feel the pain and the exhaustion at home later, when he couldn’t see. I felt like such a hypocrite for telling others online to own their conditions when I was ashamed of mine around him. Ultimately I was different to the girl he fell in love with. The adjustment was hard for me to face but I had no other option, I think he wanted to ‘do the right thing’ when really he wanted to be with a girl who no longer exists.
When I was at my sickest I felt like I didn’t have a friend in the world. I was extremely lonely. I hadn’t yet discovered this amazing online community and thought no one would ever understand. He was all I had. He knew that, I think he still felt that pressure even after I found my amazing friends. But it also meant that when things started to go wrong I put up with them. And I put up with more and more. Every time we broke up I’d let him talk me back into staying because I was afraid there would be no one else; who would want to be with the sick girl? (we’ll talk more about this in a second). The personal stuff will always remain personal and it can be hard to see from the inside when things aren’t right but the one thing I have learnt is: just because you aren’t being treated badly in a relationship, it doesn’t mean you are being treated well. And I honestly think the kindest thing you can do when you know it’s over is to let it be over (Illness totally aside). You save both of you a lot of time in an unhappy relationship. The end of our relationship hasn’t gone the amicable way I would’ve liked it to, but I do know we are both happier and I do feel like a weight has been lifted off of my shoulders. I’m free to truly be myself.
There’s hard stuff in every relationship but it’s how you communicate through it that counts and that’s one thing we were always awful at. In the Little Mix song that this section is named after they talk about the deleting of pictures and the blocking of numbers but I’ve never been like that. I don’t understand why people are so keen to erase the memories. I heard a quote today which really resonated: ‘In order to love who you are you cannot hate the experiences that shaped you’. I thought that was important in regards to relationships and chronic illnesses. Whatever bad things happened, there were good times. Especially as I was with my Ex during some of the most formative years of my adult life. I don’t think we truly loved each other for a long time but even if we never speak again he will always be the person who helped me learn to drive, the person I went on my first holidays alone with, the person who was there through all of my crazy uni experience and the person who was my greatest friend when I was at my sickest. So I thank him for that.
I’ve never really dated before and I definitely have never been on a dating app so to start that during a global pandemic has been an interesting experience to say the least. Dating with a chronic illness was something that absolutely terrified me. I was scared no one would understand, they’d all assume my life was awful and sad and that no one would want me for me, they’d just see a walking stick and run. On Tinder, I decided to not show it (I realise I’m lucky to have that option). Firstly because I wasn’t sure how people would react but also because I didn’t want to attract weirdos who would fetishize my disability. In some ways, I think the pandemic has made the whole experience easier for me because there was no pressure to meet up (the ones that wanted to went straight in the bin) and it meant I could get to know people on a different level. There was a strange level of shame I carried with me about my illness. At first when people asked about my blog & youtube channel I’d be vague and tell them it was about lifestyle & health, or say something about makeup so they no longer cared. This makes no sense as they are things I am hugely proud of! Slowly, as people started asking for my Instagram, I started sharing. It was quite a good test without too much heartache because if they took one look at my walking stick and never replied I knew they weren’t for me without having to hear their strange excuses. But overall I was pleasantly surprised by the response. Obviously, it’s tricky because you can’t truly know about someone’s illness until you’re around it a lot of the time and I didn’t go into huge depth about the specifics but it was nice that it could just be seen as something I deal with as opposed to a deal-breaker. I often worry, even with my friends, that I get seen as ‘Jenni, the sick one’ and I don’t think my advocacy work helps that image on occasion, so it’s been really nice to be seen as ‘Jenni, the smart one’ ‘Jenni, the funny one’ Jenni, the silly one’ ‘Jenni, the one who dresses up as a princess’ ‘Jenni, the one who loves Mcfly too much’ ‘Jenni, the one with the cute smile’ or even ‘Jenni, the sexy one’ for a change. I’m not sure what the reality will be like when I am not hiding behind a screen on a virtual date or sat 6 ft away from someone on a socially distanced one, poking them with my walking stick when they veer too close, but it has given me hope.
So this is a little note to my future husband, whoever he may turn out to be:
Dear Future Husband (or just boyfriend, but I am fairly set on the whole fairytale wedding & ‘Mondler’ style marriage thing :P),
You’re quite lucky to be meeting me now whether it’s tomorrow, in five years time or we might have already met. The reason is that I truly hope and pray, perhaps naively, that the worst of my health stuff is over; or at least vaguely understood and well managed. Even if that isn’t the case, I’m a much stronger and more interesting person than I was even a year ago. If you’ve got this far you already care about me for me and you know I am way more than my illness. But you also know my illness is something which does dictate my life a lot. So here’s some warnings and advice about being in a relationship with my chronic illnesses which you might find useful.
Firstly, I think you have to know that you will never understand or even be able to comprehend the amount of pain and symptoms that are going on in my body on a daily basis, unless you have a chronic illness too, which, I’m not going to lie, probably isn’t the best idea given the physical support I sometimes need. You can be the best most caring person in the world and read every book and watch every video and you may be able to sympathise but you will never be able to truly empathise. Just be there. Hold my hand. There will be times when I’m frustrated and times when I’m sad and I may (probably will) take it out on you when it isn’t your fault. I apologise in advance.
You also have to know that I will need help. You will have to do things for me you wouldn’t have to do for a ‘normal’ 20-something-year-old woman. It won’t be sexy! You might have to cut up my food or get me a seat or some water when I’m struggling. Other times you will have to push me around in a wheelchair and help me out of the shower. Sometimes I will be in extreme pain where all I will do is scream and cry and beg you to make it stop. I know it’s hard but don’t try and fix things or suggest things, I know you mean well but, at the end of the day, however much you want to, you can’t take the pain away. Hold my hand and be there. Eventually, it will pass. When I’m in pain I can forget what helps me but only suggest things you know will help (because they’ve helped before) and are on my flare-up plan; if you ever suggest yoga or turmeric you’ll be out the door before you can say downward dog. You have to accept there will be good days and bad days and those will be unpredictable. You have learn to manage it the same way I do. And, like me, you will get t wrong sometimes.
I think something that can’t be underestimated with being with someone with a chronic illness is communication. Don’t treat it like an elephant in the room, let’s talk about it. There are no silly questions. I can’t and don’t expect you to know everything, I probably don’t want you to. But learn about spoon theory and ask if I have enough spoons left occasionally. Ask about my actual pain levels vs the ones I’m trying to show the world. Definitely not all the time, but just enough to know you haven’t forgotten the invisible battle I face every day. The biggest thing I felt when I was diagnosed was alone. Alone in finding out stuff and alone in knowing what to do. You’ve probably never heard of my conditions before, I hadn’t. Situations which might have been normal for me for years are all new to you, it can’t be easy. The best thing I ever did was find people with the same condition to talk to, people that understood. So talk to people, find other partners of people with my conditions, ask how they’ve managed and lean on them for support and support them in return.
Finally, for some unknown reason, you love me. You love me and my broken little body. You have no excuses because you DID sign up for this, I will have asked a hundred times if you’re sure and probably tried to scare you off a few times. If you do get scared in the early days it’s probably best not to be selfish and to just let me go, I won’t blame you if it’s too hard. I probably wouldn’t choose it myself if I had the option. But don’t carry it around because you think it’s a bad reason to leave someone and then break my heart later when it gets too much. You’ll have to help me and support me if someone makes an ableist comment and let me meet your family & friends walking stick in hand (Not a common thing you’d expect a young woman to use) and you have to be proud of that. I am proud of that, proud of where I’ve come from and where I hope to go and, despite all the pain, I wouldn’t change it for the world because it is part of who I am. I hope you see that, to be honest we won’t get too far if you don’t.
I can’t wait for all of our wonderful adventures on the good days and to be snuggled up next to you on the days that aren’t so good.
I Love You So Much,
so accurate – love your writing style
Thank you so much! x
Syringomyelia. I unfortunately can relate.