“I’m currently unable to work. I have to spend most of my time resting in bed and absolutely everything is a struggle. Essentially – as much as I try to deny it – it impacts on every aspect of my life.”
In a bid to raise awareness on an under-reported health issue, IPF are speaking to young people about their experiences with invisible illnesses.
Here we speak to IPF Founder Natasha Lipman about her experience of living with Ehlers-Danlos Syndrome and other invisible conditions.
What is your invisible illness called?
I have Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, ME/CFS and Histamine Intolerance.
What symptoms does it cause?
A lot of these conditions have really overlapping symptoms so sometimes it can be hard to attribute symptoms to any particular illness. I will say that I consider my EDS to be like my “trunk”. EDS is a dysfunction of the connective tissue, which is the “glue” that holds our bodies together. This can affect everything from our joints and guts to our eyes.
The PoTs is a dysfuntion of the autonomic nervous system. The doctors think it is caused by the EDS, likewise, the histamine intolerance (histamine is produced in mast cells which are found in connective tissue). My main symptoms are chronic pain, chronic fatigue, frequent subluxations, brain fog, palpitations, dizziness and orthostatic intolerance.
How does it personally affect your life?
I’m currently unable to work. I have to spend most of my time resting in bed and absolutely everything is a struggle. I often have to balance up going to the fridge to get something to eat with getting out of bed to go to the loo. I have become significantly more isolated and frustrated as I can’t go out often. Essentially – as much as I try to deny it – it impacts on every aspect of my life.
There was a point a couple of years ago when I became reactive to most foods and perfumes, and my digestive system packed up. Luckily, I can eat again now, but that was a new, added frustration!
I’m learning how to find that balance, but after 20 years, I still haven’t got there. At the moment I’m spending a lot of time at the house with my parents, where my mum helps me with the cooking – lifting heavy dishes, doing the washing up – to make sure that I’m eating healthily. This morning, for example, I wrote a couple of hundred words of an essay I have due – another thing, my brain literally doesn’t seem to be able to produce a coherent paragraph anymore, so studying has become close to impossible – made a crumble, washed my hair and sent some emails. My mum then had to tell me that I’m done for the day. I could feel like I pushed myself a lot.
It’s hard to accept in your twenties that your body can’t always do the small – and big – things you want it to do.
The thing is, my conditions are also extremely fluctuating, which means I don’t know how I’m going to feel from one day to the next. I know today was better than yesterday because it didn’t rain. Sometimes I can push through really well for a week. Sometimes I can’t get out of bed.
Have you experienced any discrimination because your illness “can’t be seen”?
I’ve been followed by a traffic warden after using a blue badge, but aside from looks and lack of understanding I haven’t faced any massive discrimination.
People do seem confused when I’m out in a wheelchair and I get up and walk.
I think the thing that’s more difficult to handle is the unconscious discrimination and expectations that society has of healthy looking 20-year-olds, which has made me try to over-explain and rationalise my issues to employers because I don’t want them to feel like I’m lazy or making excuses – I’m really not.
What kind of care have you received and how has it affected you?
I’ve been really lucky that for my whole life – until just a few months ago! I’ve had private medical insurance. This has meant that I’ve had to avoid waiting lists and could see all kinds of specialists as and when I needed them.
For example, when my PoTS symptoms first became severe, I went to see a doctor on the NHS, was put on steroids and was told that I’d have to wait a year for the tests. So I went two weeks later and got the tests done privately – why take steroids when you may not need to?
I’ve also been lucky that when emergencies happened I could see a doctor whenever I needed to, and had physiotherapy pretty much on tap growing up. I honestly believe that if I didn’t have access to the care as and when I needed it I would be significantly worse than I am now.
Do you think enough is being done in the health sector to cater for invisible illness?
Long term conditions need long term care, but unfortunately I’ve found that what I’ve received is less than holistic. I know that it’s difficult for the health sector – it’s time-consuming and expensive.
The hardest thing for many people with an illness like mine is that there is actually very little known about them and very little that can be done to help.
I’m extremely sensitive to medication; side effects are way worse than my original symptoms and pain killers don’t work on me – seriously. So short of trying me on drug after drugs – getting me so ill that I thought I would die – and sending me to therapy, there’s not really anything that they can do.
I’m just kind of stuck here figuring out how to get on with life. There’s a significant problem with access to support and long-term care for the vast majority of us.
My entire condition management is reliant on day-to-day lifestyle changes. Some days are better than others, but I would say that the majority of what I do has been through my own research and trial and error, rather than support from my doctors. It’s tough with many invisible conditions, because they’re so fluctuating – for and between people – and many are severely lacking in funding and scientific understanding.
Do you think there is enough media awareness about invisible illness?
Thanks to the internet there is more awareness than ever before. People with all kinds of conditions are blogging about their daily realities. I sometimes find it odd when I talk and write about what I do. It seems too personal, and I know how weird some of the things sound when they come out of my “healthy-looking” body.
But I find that the more people around me are made aware, the easier my life becomes. And I think it’s the same for most people. We can never get the support we need without a level of empathy and understanding.
It’s easy to dismiss us as lazy fakers, when it’s very much not the case.
Just look at the controversy surrounding the PACE study into ME that was released a few weeks ago. There’s still a huge way to go but now there’s more awareness than ever before, and I’m grateful for that. It also makes it easier to feel confident, empowered and not ashamed and embarrassed about something I can’t control.