I spent my entire life hiding the fact that I was ill.
I probably didn’t do it all that well.
But I tried.
So so hard.
I’m not sure if part of the reason was that I didn’t get diagnosed with EDS until I was 21 and so I never had a name to put to why my body would randomly fall apart or I just had times where I couldn’t function.
So unless my knee literally dislocated in public (a frequent occurrence – but it did result in fun trips around the school being pushed on a rolling computer chair), I would force myself to push through like crazy.
My frequent trips to the school nurse were often met with a raised eyebrow, letters getting me out of PE and Sports Day resulted in phone calls home. I wasn’t allowed on the school ski trip to Canada with all of my friends, I couldn’t go to ice skating birthday parties, and I was often left quite sad and confused.
Writing that makes me sound like I was quite a sad and lonely kid. Luckily, I was a pretty outgoing. I loved music and drama and a good group of friends, an active social life and a wide range of interests. My constant pain was something that was going on that no one else really knew about.
I got through my GCSEs with three slipped disks in my back, bent over like Quasimodo and did well. I got through my A-levels, a summer New York Film Academy Course in Paris (where I literally remember being physically dragged around the city, trying to keep up with everyone so I could do the things I loved), and two gap yahs with a lot of time spent in Paris bookended by working.
I wanted to go to the New York Film Academy in New York. I wanted to do the acting for film programme. I loved acting so much. I always used to say that I loved being able to be someone else. It’s not that I had a bad life. I have a great family, a huge amount of support, I went to good schools where I did well and have had the opportunity to do so many things and pursue most of the things I have wanted. Thinking back to it, it was a way to take a break from the little Natasha that was in pain and lying about it all the time, and get to experience life as someone else for a bit. I’m still somewhat bitter that I couldn’t pursue that. But physically there was no way in hell that I was up to it (my physiotherapists held an intervention after a dislocation that pushed me over the edge and I was determined to get surgery so I could go – thank god I didn’t!) and there’s no way in hell that I’d have been able to get medical insurance that would cover me out there. Even so. It was hard. And yes, blah blah blah, everything happens for a reason, blah etc.
Once I was diagnosed, things started changing a little bit. It was a few months before I was due to start my undergraduate degree, and I was able to get a letter from my doctor to explain why I couldn’t always go to class, why I might not be able to take certain exams and why my papers would sometimes be late.
At that point I was talking about my health when it benefited me. But that was all. I used it to get out of classes I knew I could pass with flying colours without attending, thereby saving my energy to go out with friends.
While I’m sure many people could pick up that something wasn’t quite right, I was so determined to live a “normal” life that I pushed so hard that I made myself so much worse. My natural personality leans towards the ever so helpful boom and bust cycle.
Aside from the social, my health was starting to really impact my professional life. I’m really lucky in the sense that I’ve never found it difficult to get a job doing something that I want to do. I’ve had some great experiences, great internships and jobs that I really enjoyed.
The problem was that I’d often start the job when I was feeling ok, and obviously never wanted to tell anybody that I had health problems. Embarrassment, fear of not being employable, fear of what people would think about me, fear of being seen as lazy, guilt, and all that fun stuff floated around as a constant in my life. The problem would come a few days, a few weeks, a few months later when I would have a flare up and I literally couldn’t work. Instead of saying anything I’d often just quit whatever I was doing and rest up and try again. I’m nothing if not persistent.
I was a few semesters into my MA in International Relations when I had the “anti-depressant incident” that turned me psychotic and did all kinds of fun things to my brain that left me stuck inside for several months. After a few weeks of being in bed I always get super bored and frustrated, so I started an international relations youth blog that went on to do really well. At the time it was something that was just keeping me occupied while house-bound, but it turned into the opportunity to go to India to meet Richard Branson (while a great experience, I paid for that big time health wise. I spent any time we weren’t on schedule crying in the loo/in my room), and the potential for investment and development. After a few months I started feeling better and went back to university, but the flares returned. I decided to focus all my time on trying to work for myself and develop this project. I got a grant and my parents supported me in getting an office near my house and I started working with a really amazing team. We had such exciting plans and we knew things were going to go really well.
Then my other illnesses rocked on up. I pushed through for months, rolling around on the floor, having meetings on the sofa while under my duvet, meeting important people in such a haze of meds, pain and confusion that I probably made a massive fool of myself. Eventually, and much to my regret, we had to call everything off just before we were about to launch a massive crowdfunding campaign. It was all too much. I just needed to sleep.
It was at that point where I realised that if I was going to get the help and support I needed, personally and professionally, I’d need to start being upfront and honest. The first time I had ever been entirely honest was in an internship interview. We were talking about why I’d set up that blog, and for some reason I just decided to tell the truth about my health. The next day I got a phone call saying that I didn’t get the internship (brain: “err why would you phone to reject me?”) but they’d like to create a job for me. It was so freeing. I’d been through so much and I’d told the truth and nobody thought less of me for it. In fact, people were so incredibly kind and supportive. If I needed to work from home, there was no questioning, no making me feel guilty. I could come into the office whenever I could, avoiding rush hour and if I needed to not work, I could do that too.
Unfortunately, I had to stop working entirely after a few months, but I was still offered the odd freelance writing job that I could do in bed. It felt good to know that my work was valued enough that even when I felt entirely useless, I wasn’t.
When I started freelancing at Virgin, I kind of did the same thing. Because I write publicly about my health I never know what is TMI, so I kind of just word dump everything. It was a kind of “well, this is me and my peculiarities, and if you want me, this is what you get”.
The amount of support I was given there was extraordinary. When I was put on a permanent contract in August last year, they did everything to support me and make sure they did everything they could to try and help me work. From taking away things that caused me too much stress, helping me work from home, helping me get a grant to get cabs into the office, providing software and support, it made me teary almost every single time we had our bi-monthly “how’s Natasha doing” sessions. I felt like I was imposing so much – not being able to do as much work and them needing to take up so much time in able to support me. But I know that when I can work my work is good. And it took me a really long time to be ok with the fact that yes, while it might be extra work for other people, all I’m getting is a more even playing field. Being honest about my limitations meant that they knew what to expect, and they were able to provide the support that I needed to be able to work. When I had a flare up there was no guilt about taking time off (my one comment at a review last year was: “Natasha really needs to stop thinking we’re going to fire her”) or if I just couldn’t do anything. I needed to constantly be told to be honest about my health. And it took a really long time because I was so used to trying to hide it so I could work. Unfortunately, right now I’m not able to work. And that makes me sad, but I’m eternally grateful for the support I’ve been given and it makes me more optimistic about being able to get back to work when my body calms down a little bit.
I’ve never really been one to question my abilities. I know that I’m an extremely able and capable person – but this can be thrown into confusion when your brain and body just doesn’t want to work. So knowing that there are people that see beyond that and are willing to help can be life changing, and for me helps mitigate the depression that can (understandably) accompany a flare.
I also took this new honesty and translated it into my personal life. I now listen to my gut. There’s no more FOMO (Fear Of Missing Out). I’m honest about how I’m feeling and whether I can be social and go out and do things. Surrounding yourself with people that are understanding (they may not understand but they are supportive enough to make you not feel guilty for cancelling) and willing to come and veg out on your sofa instead of going out also makes a huge difference. It’s hard not to isolate yourself when you feel rubbish (my mum the other day warned me about becoming a shut-in after constantly cancelling most of my plans), but I think balancing the mental benefits you’re going to get from going out and doing things that make you happy with your physical symptoms is really important. I’ve written more about that here.
This turned into a much longer post than I anticipated, so if you’ve made it this far – thank you! I guess what I’m trying to say, in my typically drawn out way, is that being honest changed everything. I spent so long thinking “why should anyone know about this?” that I was often making myself more unwell by pushing myself way further than I ever should. By telling the truth about my needs and limitations, I’m able to get the support I need to try and continue to live my life, and that’s a really powerful and uplifting feeling. It also makes you not feel so isolated. People may not be able to understand, but they can be there.
That being said, not everyone is supportive and amazing. I’ve had a lot of battles. There are a lot of people who are just dicks. I just cut them out, yo.
I hope that this post helps people struggling with the fear, the guilt and the same that can often come with struggling with an invisible illness. Just because you can’t see it, doesn’t mean it’s not there. And the more awareness we raise of these issues, the more help and understanding there can be, and the more we can just get on with things and try and live our lives as best as we can.