I know Dysautonomia Awareness Month has drawn to a close but I have one more post for you in my series of posts to raise awareness (see my previous posts: Dysautonomia Awareness Month 2014 and Dysautonomia Awareness Month: a more detailed look POTS). Today I am sharing another sufferer’s dysautonomia story with you. Each person with dysautonomia is different, some are affected only mildly, while others are severely disabled and housebound like myself. Natasha Lipman used to be like me, but is now in a much better place which she puts down to changing to a plant based diet. She is still poorly but she is getting her life back on track and able to work again! I hope that by sharing others stories I can further educate you on dysautonomia and raise awareness!
1. Would you mind introducing yourself?
My name’s Natasha Lipman, I’m a chronic illness and wellness blogger based in London. I use a plant-based diet to try and heal from three chronic illnesses (and the associated rubbish that comes along with them!). I run plant-based picnics for other wellness lovers in London and am working on the Health Bloggers Community to help support other aspiring health bloggers. I work for Virgin Unite managing entrepreneurship content, and do freelance writing and consulting. In a past life I ran an international platform for politically engaged young people, was a member of the Global Changemakers and was even invited to India to meet Richard Branson for the potential I show as an entrepreneur.
2. When did you begin suffering from Dysautonomia?
I’ve had EDS (Ehlers-Danlos syndrome – a connective tissue condition characterised by joint hypermobility) my whole life and as such have had some minor symptoms for as long as I can remember, but always just thought they were inconvenient parts of ‘me’. My EDS specialist recommended that I get tested for PoTS. About a week before the tests I had my first real PoTS ‘attack’, but didn’t really know that’s what it was at the time. The tests themselves were so physically traumatic for me, I think they triggered full on PoTS in about May last year.
3. How many doctors did you see before reaching an accurate diagnosis?
Luckily (ha) because of the EDS, I was sent to see the right professors straight away. I didn’t get diagnosed with EDS until I was 21, though. It was funny, I never thought I had a condition, just that ‘this is how my body is’!
4. What are the main symptoms that you experience currently?
My PoTS is mostly manageable day to day. I still suffer from chronic fatigue, but the dizziness is something that is more a minor inconvenience than as severe as it was last year. I’m in chronic pain from my EDS and still have to spend most of my time resting. I also know that if I’m not extremely strict and careful about what I eat and drink I can’t really function (as I rely on diet instead of medication). I also am struggling quite a lot with depression at the moment.
5. How much do your symptoms prevent you from living a ‘normal’ life?
I would say they have prevented me living the ‘normal’ life I have wanted to lead, but I have my own normal now. I’m really lucky that I’m able to work and do a lot of amazing things that other people with chronic illnesses aren’t able to do thanks to an incredible support network (and being one of the most stubborn people you’ll ever meet).
It can be a struggle because I do have to spend a lot of time resting, and the difficulty is I never know how I will be from day to day. One day I can go out all day (and yes, pay for it, but still do it), but others I literally can’t function at all or do anything more.
6. What do you want others to know about Dysautonomia?
I think it’s more about chronic illness and invisible illness in general – that just because someone may look healthy it doesn’t mean that they’re not struggling. I have been having a really horrendous few weeks and decided to go to Paris to try and find some balance. I was talking to a friend’s mum while I was there and explaining to her what’s been going on in my life since I last saw her (seven years ago!) and she just kept saying ‘well you look fine and you seem fine!’
It’s a double edged sword. While you don’t want to ‘look sick’ and be ‘that girl’, you still want people to try and understand and recognise.
One thing I would say is that being open about my health has been life changing. I spent my whole life keeping it a secret so I could push on and do whatever I wanted to, even though it made me more unwell. I am now super honest about my limitations. My company hired me knowing exactly what my health problems are and what my requirements are. This has allowed them to adjust accordingly and offer me so much support to help me be able to work.
Due to my ill health over the last few weeks, I have been told to rest and take time off. I want to try and work again next week, and am doing so from home and with daily calls with my boss to make sure that I”m up to it.
If you have something to offer and people like you and what you do, they will be willing to support you no matter what. It’s just getting comfortable with that and realising that you can ask for help!
7. What are you most thankful to have gained from your experience of
living with Dysautonomia?
This probably sounds bad, but nothing. I’m not thankful for having crappy health! Any benefits that have come, I’d give them up in a heartbeat to be ‘normal’. That being said, without developing full blown PoTS I wouldn’t have started my Instagram account or found the diet that I did, so as much as I will never be ok with the overall situation, it has caused me to continually find new paths and interests whenever one is closed to me because of my health.
Natasha is a huge inspiration to me! I’ve been following her food journey on Instagram for a while now; it’s amazing to see her health improving gradually since she changed her diet! I really hope the same will happen for me in time as I changed my diet earlier this year too.