This week (26th September – 2nd October) is Invisible Illness Awareness Week.
To help increase awareness of the many people living with a chronic or invisible illness all around the world, we interviewed chronic illness blogger, Natasha Lipman. Natasha shares with us how her illness affects her on a daily basis and in the workplace, as well as her views on wellness bloggers who give advice on chronic illness.
Natasha Lipman is a chronic illness blogger from London. She is in the process of setting up Project Chronic, the first charity in the UK to support young people with chronic and invisible illnesses. She is also the founder of the IPF, co-founder of Libyan Youth Voices, and is currently studying for her LLM. Natasha is also a collector of vaguely obnoxious do-gooder titles: she is a Global Changemaker, a Rhize Emerging Catalyst and the winner of the Virgin Media Pioneers trip to India to meet Richard Branson.
She is a freelance writer, content creator and social media do-er. When she’s not working more than her doctors tell her she should, she can be found reading, trying to re-learn French by reading Harry Potter and learning the clarinet.
Can you explain what the term ‘chronic illness’ actually means?
The actual definition (as far as I’m aware!) is an illness or condition that lasts for longer than three months. There’s a lot of different terminology, because I would say that I have a chronic illness (well, four), but I’d also be considered disabled – even though I’ve never felt like I am. The language and what it means is really interesting to think about because of the societal stigma attached to a lot of it. But essentially, it’s an illness or disease that is long-term, and in my case (currently) incurable. No matter how much green juice I drink or yoga I do (I don’t do yoga).
I have Ehlers-Danlos Syndrome (a connective tissue disorder that is basically the ‘trunk’ – essentially my collagen is too stretchy so it affects everything from my joints… so many dislocations… to my stomach, Postural Orthostatic Tachychardia Syndrome (my autonomic nervous system, the thing that regulates all the unconscious processes in your body, doesn’t work properly), ME/CFS (chronic fatigue. Like. Real fatigue. Not the thing that you get when you’ve been partying too much) & Histamine Intolerance.
What sort of difficulties do you face on a day-to-day basis as a result of your chronic illness?
I find it really hard to exist in my body. I feel so unwell all the time that just living is a full-time job. I suffer from significant pain and fatigue (and other stuff like dislocations and autonomic dysfunction) that makes everything really difficult. From the big things like working and going out like a healthy 20-something, to small things like being able to support myself or even thinking about every step I take in case I dislocate. Unfortunately, as much as I try to do as much as I can, my health impacts on every aspect of my life. It can be really frustrating, especially when you’re very ambitious and capable and the only thing standing in your way is your own body! That’s what I struggle with the most. As sick as I am of being sick, the boredom and frustration that comes with it are probably the most difficult things for me to deal with.
Do you think there’s a lack of understanding about what a chronic illness entails?
Definitely. The type of illnesses that I talk about (and personally experience) are invisible and so it’s really hard for people to understand or even believe that there’s something wrong. I’ve always known how to behave in public, so I’m often able to push through and get on with my life as much as possible, and more often than not, when things are horrific, people wouldn’t see me anyway! The miserable, crying, very sick Natasha gets reserved for family and close friends. And my blog.
People find it hard to look at a perfectly healthy person and see that they’re sick. And our understanding of disability is very much focused on something that we can see or understand really tangibly, like blindness or not being able to use your legs.
There’s also the whole “you’re too young to be sick” thing, as well as sickness and pain in women being dismissed more than in men, and chalked up to what is essentially the age-old ‘women are hysterical’ thing.
I’m guilty of it myself. When I see someone go into a disabled loo I’m like (in my head): ‘they’d better be disabled to be using that loo – they look fine!’ and then I’m like: ‘oh yeah, so do I’ – it’s often hard to think past that initial reaction of what we see.
How do people tend to react when you tell them about your illness?
It’s fine with people that know me and what I do. But it really depends. I tend to try and over-explain because a) I have no filter and b) it’s just easier that way. Even people who I explain it to don’t really get it. Even I know how odd it must sound coming out of my mouth when I look totally fine.
Sometimes the questions are amusing, sometimes invasive (especially from people you don’t know). I also don’t like it when people talk about me doing things as ‘inspirational’ – I find it patronising. I know it’s not meant that way, but I’m just getting on with my life in the same way as you. Although to be fair, I don’t have patience for healthy lazy people who don’t try because I’d give anything to have a healthy body and be able to use it. I had a few friends like that and I literally couldn’t deal with it.
“I don’t have patience for healthy lazy people who don’t try”
Also, in general, people who have a problem with you being sick aren’t worth your energy or keeping around. Your friends will come to you when you can’t go out (I now just have a parade of people coming to see me) and will let you work from home or text to see how you are or if you need anything. It’s important to remind yourself that you’re not a burden. You just have extra things that you may need to adjust for, and anyone worth being around (that really cares about you) will do that.
Oh, I also have a pretty dark and sarcastic sense of humour so people sometimes find it difficult to deal with because they think what I say is inappropriate, but it’s my body, I can say what I want about it!
How can people positively support someone with a chronic illness?
I know how hard it can be for the people around me, especially when there’s not really anything anyone can do. All I can say is be there and ask what you can do to support them. We’re all different. For me, most of the time it’s just being there and coming over and giving me hugs and food (and mocking it all in hilarious ways). Believe them, don’t stop inviting them if they can’t go out. Remember, they’re still the same person, they just might not be able to go out and do the same activities. But try and find ways to do things that you both enjoy, just in a modified way!
And don’t tell them about random ‘cures’ you’ve found on the internet or offer advice on how to manage their illness. Just don’t.
How has having a chronic illness affected your experience in the workplace?
I mean, I’ve had to quit every job I’ve had, but I’ve actually had really positive experiences at work because I’ve been lucky enough to work for companies that have done everything in their power to support me. The jobs that I’ve had to quit are the ones that required full-time work or lots of in-office time, or were at times in my life when I really needed to just focus on my health.
When I was younger I never really revealed anything about my health until I had to. It made me feel less-than. I didn’t get diagnosed with anything until I was 21, so there was still quite a learning curve. Now, I’m lucky in the sense that I can work for myself and pick and choose the work that I take on. I’m very open and upfront about my health conditions (blogging will do that), how they affect me and how I work. Essentially, if they don’t want to deal with that then they shouldn’t hire me.
I’ve realised over the last year that I still do need to stand up for myself more and not push myself to try and work like healthy people. Generally, I feel like my work is of a standard that means that employers are happy to make those adjustments, but it’s often balancing my own expectations of wanting to *go* to work or work all the time. But it’s just not feasible.
“for many people with chronic illnesses, working is an absolute nightmare”
I’ve worked in fields where there is generally either more money available for them to put things in place to support me or they understand a more ‘modern’ and flexible way of working, which really suits me.
I’m really lucky in that sense because I’m able to essentially work from my bed and write and be on social and connect with people through that. I don’t know what I’d do if I wasn’t able to do that, and for many people with chronic illnesses, working is an absolute nightmare. The old careers I wanted to pursue (first acting and then diplomacy and then counter-terrorism) would totally be off the table for me.
One of the difficult things, even as someone who has found ways to work, is that working part-time (and even 1 day of not working at home can cause a massive knock-on effect for me because I’m out all day running around), can mean that securing a financial future is quite a scary thought. I can support myself at this point, but there have been times when I’ve had to stop working, but would get a day or so of writing work, which then meant I would earn too much for additional support. I’m lucky to have savings and a family that can support me enough that I can rest when I needed to and take on work when I’m able to. Many don’t have that luxury.
Finding a few stable jobs that are manageable and that I can do from home has been massively helpful for me. Also, I haven’t had to apply for a job in years because I’ve got most things through recommendation – which helps with the whole getting reasonable adjustment thing!
At the same time, I wish there had been more help out there for me from the beginning. I pushed through enough to get the experience to be able to do that when I was younger. I can’t imagine what it would be like if I was as sick as I was mid-twenties in my early twenties – I wouldn’t have been able to get that experience that has helped me to work now.
Many wellness bloggers advise against taking medication – what do you think about this advice? What is your opinion on taking medication for chronic illness?
Wellness bloggers are not doctors, nor do they have any qualifications to recommend anything about medication. It shows a significant misunderstanding of health and the real world – a lot of people are dependent on their medication – who the hell are they to tell anyone to stop taking it? There are a lot of legitimate problems with the healthcare system and the pharmaceutical industry that need to be addressed, but saying point-blank that medication is bad and wrong and evil is just ableist and disgusting. They often also have a fundamental misunderstanding of basic science, peddling pseudo-scientific ideas about what can “cure” chronic illness. It’s really dangerous and upsetting because I know how easy it is to fall into that world when you’re sick and desperate for something to make you better.
“Wellness bloggers are not doctors, nor do they have any qualifications to recommend anything about medication.”
If you can find medication that works for you and helps you get through the day, take it. You should NEVER feel shamed out of taking your medication. Never listen to someone on the internet that knows nothing about you.
I didn’t take medication for a really long time, and a lot of people asked me about it. It was never because I was anti-medication. It was because the medication that I had taken had caused really severe side-effects and made me unwell. But for many, those same pills were life-savers. Our bodies are all different. I wish those meds had worked.
Over the last year my pain levels have become more debilitating (a big part is because I’m working more than I should) and we are experimenting with new pain management medications. I am currently trying a morphine patch and take liquid morphine for the pain when it’s bad. I’m also going to have to look at other things to help with a back injury that was caused by literally doing nothing (yay my body). The morphine helps. Do I want to be taking it? Of course not. But it’s no-one else’s bloody business whether I take it or not, and I’d rather not be in pain, thank you very much.
Unfortunately there are so many of these conditions that still aren’t well understood so there really are very limited options for medication. I had my fair share of problems with doctors, especially when a medication didn’t work for me that did for other people. When there’s so little information and help out there because the science just isn’t there yet, it can be really hard. So all we can do is try, hope our doctors listen to us and find something that works. But even then, I know that taking super strong doses of super strong drugs only take the edge off. But that’s better than nothing.
What role has blogging played in your health journey?
I started blogging as a way to vent. I’ve always found writing really cathartic, and it has been a great way to get all of the anger and pain and frustration out of my head so I can understand how I feel about it all in a healthier way.
When people started reading it was also really nice to know that I wasn’t the only one going through all of it and it made me realise how many people out there struggle with chronic illnesses.
“I’ve always found writing really cathartic”
When I started ‘getting into it’ because my followers were increasing, I felt like I needed to post every week. One of the main ‘tips’ for good blogging is to publish consistently and at the same time. But my blog is so personal that I found that the content I was sending out was just for the sake of posting something and it didn’t feel right and it didn’t connect in the way I wanted. I also felt the pressure to post recipes because I posted a lot of food on Instagram. I’m a good cook but I don’t care about recipes or recipe testing. I don’t enjoy it. I just felt like it’s what I ‘should’ do and that’s not what blogging is about.
Now I post when I have something to write about. It’s not regular, but it means that I’m able to share things that are actually meaningful and that my readers can connect with.
I get a lot of emails from people asking for advice, and I feel bad to say I’ve got a pile of them in my inbox that need answering. I want to give the best advice I can, but it’s hard to help everyone, and I have to look after myself first. I try to get to them when I can because I know how much having someone recognise and empathise can mean, or I do Skype coaching sessions for people to have someone to chat to about it. One thing that is hard is when I get people emailing me when they’re very distressed and suicidal. I’m not a doctor or a psychologist. I’m just another patient, and while I empathise so much, it’s a lot of responsibility to put on the shoulders of someone you don’t know, and it’s sometimes quite overwhelming and hard to cope with because there’s nothing I can do. I feel a massive responsibility, especially because my audience are full of people who are very vulnerable, to be honest and transparent and try and help as much as I can. But at the same time, I’m not qualified to give any advice like that – so I can only write about my own experiences and feelings. When I get emails that I feel are very out of my purview, I will pass on information for the Samaritans and different charities. I wish I could do more, but it would be irresponsible.
“One thing that is hard is when I get people emailing me when they’re very distressed and suicidal. I’m not a doctor or a psychologist.”
It’s really flattering that people feel that they can connect with me and feel like they know me, but it’s also quite difficult when I get lots of Facebook messages on my personal account and people want to have a chat. And again, I feel really bad for saying this, but I am entitled to have a private space, and I can’t be friends and be on-call to give advice and chat with people, as much as I’d like to help. Actually, one of my best friends was one of the first people to email me after a post I published on the Huffington Post, but that was in the very early days and it’s just not feasible anymore with the amount of emails that I get.
My blog has also opened up a bunch of doors work-wise, which is kind of ridiculous. I’ve got work from it, got some amazing connections (and amazing friends from Instagram) and it has given me the audience and opportunity to be able to do some really amazing things. So I’m very lucky that my rambles have done so much for me!
Do you notice a relationship between your diet and your pain management?
Up to a point. Because I have histamine and gastric issues, my diet is really important, so I do have to watch what I eat to keep my stomach and my reactions under control. My whole thing is I’d like to give myself the best possible chance to feel as good as possible, so I cook a lot and I eat really healthily (most of the time). And anyone is going to feel better when they’re eating well than if they live off of fast-food (or, grilled cheese sandwiches…mmm…)
As with a lot of things, sometimes it just needs time to calm down. A few years out and my stomach issues are SO much better (I can eat!) and my reactions are really minimal.
I do have to keep an eye on my diet most of the time, but if I want a pizza or a burger or gelato, I’m going to have it. Being really strict and everything-free didn’t make me better (in fact I got worse) and it made me miserable. I’d rather be happy. Life is hard enough as it is!
“if I want a pizza or a burger or gelato, I’m going to have it.”
And finally, can you give us an update on the launch of your charity, Project Chronic?
Unfortunately, I’ve been really bad at following my own advice and have had to take a step back from Project Chronic because I was doing far too much. There’s so much exciting stuff on the table, and I’ve just picked it up again and am looking forward to pushing on with a hope to do a pre-launch of phase 1 in the next 6 months!