An interview with Jess @delicatelittlepetal

 Hi everyone! We’re from the Fullabilities project. My name is Ola and I’m here with Benedykt. Today we have the pleasure to interview Jess, an Australian blogger, writer and disabilities advocate. 

How has living with a disability affected your life?

So I would say that my disabilities have affected my life to different varying degrees at different points of my life. I’d always found sports and physical activities quite challenging and I found it quite difficult to keep up with my PS in that regard. Earlier on in my life I was still able to live my life more “normally”, for lack of a better word. About four years ago my condition deteriorated quite significantly and that’s when I started to have to push a lot harder for the answers to what was wrong with my body. And about three years ago I took up these off my ability aids and I decided to start restructuring my life around my disability rather than trying to force my body to live a lifestyle that was designed for somebody else and that was causing me a lot of unnecessary pain. 

Have you noticed any difference between how Australians treat disabilities and how Belgians do?

See, that’s a little bit of a difficult question to add up, because the way I lived my life in Australia was very different to how I live now in Belgium. There are definitely a couple of things that I can remark on.  So in Australia I actually found it really difficult to be undiagnosed. I felt like I was met with a lot of suspicion and disbelief when talking to doctors or even, like, the general public, when I expressed that I had long term symptoms or difficulty doing certain activities. And I feel like… definitely when it came to friends and family, and the general public a lot of people would be threatened by the idea that you could have a long term health condition and the doctors wouldn’t necessarily be able to help and understand what was going on straight away, because that’s the odds to how chronic condition and disability are shown in the media. But, you know, on the other hand, I feel like my Belgian friends have a much better understanding of the fact that getting a diagnosis and a good, affecting, personalised treatment programme for a complex illness is very time consuming and I felt a lot more accepted, which has been really nice. I felt like if anything they’ve laid more towards, you know, appreciating the strength it’s taken to get through the last couple of years rather than treating me with suspicion and treating physical illness like it’s some kind of  moral judgement on who I am as a person. They realise that it’s something very much outside of my control. Also, from the practical perspective, I do get much more financial intervention from the Belgian health-care system as opposed to Australia. That is obviously partially affected by the fact that I now have a clear diagnosis. But, you know, the process of getting diagnosed was a bit easier here and being recognised as being chronically ill has been a lot easier whereas in Australia, unfortunately, it can be quite a degrading process.

Do you think people are getting more knowledgeable about chronic illnesses?

I think that’s a really interesting question because I think we all are really influenced by the social bubbles that we move in. So, I know from myself, I am surrounded by people who know me and my story, well, personally. Or my online chronic illness community where most people are living with a condition or a disability themselves. So, of course, they’re all very knowledgeable about it, but I don’t know if that always translates to the general public. I have had some friends and acquaintances talk to me since I’ve started blogging about how they’ve learned a lot from some of my articles and they didn’t really realise how much conditions could affect people’s lives on a day-to-day basis. And so I do like to think that individual advocates like me are starting to make a difference, but I do think more needs to be done on institutional level like schools, universities, hospitals - that kind of thing.

Now we have a bit more of a personal question. Have your chronic illnesses affected your relationships in any way? 

Definitely, yeah, I feel like when I was younger living with chronic illnesses, especially undiagnosed chronic illnesses, limited my ability to form meaningful relationships with people and I wouldn’t say that I had a lot of friends when I was younger to be quite honest with you. I think now that I’m a little older… Well, when I was in my early twenties I started to form some much better friendships, but they were still quite superficial, so I felt like I was very guarded with people, I felt like I had a dirty little secret that I didn’t want people to find out. And some of those people have left my side over the last couple of years, which has been really difficult, but the ones who have stuck around, I feel like I’ve really built a deeper connection with them, because I have a better understanding of myself and a better relationship with myself, and so they of course can better understand me and I’m really happy for having such relationships. I would actually say, like, if anything now I feel like chronic illness is more of an advantage when it comes to forming new relationships, because every single human being has baggage and mine is a lot more output on display than some people’s is, because I write about all the hairy details of my life online and if somebody finds that truth threatening, they’re not gonna have contact with me in the first place or they’re gonna reveal early on in our relationship how they deal with conflict and discomfort. And so it saves me a lot of time and energy, it makes it easy to, you know, separate the wheat from the chaff  as it were with who I wanna spend  my time and energy on. 

Do you mind when people are curious and ask about your illness?

I think that the key thing for me is the fact that you used the word “curious”, because for me it’s like the intention of a manner in which the question was asked, that makes all the difference. Like, if somebody is genuinely curious and they’re asking questions in the appropriate and sensitive way - I’ve no problem answering them at all. You know, if anything, I would rather people ask questions rather than make assumptions. But I do frequently find myself faced with, like, pretty presumptuous questions, like, you know, “what happened to you?”, “were you in an accident?”, “when are you gonna get better?”, you know, questions that mean that the person… It’s pretty much always somebody who doesn’t know me at all. I actually get stopped on the street pretty regularly so that they can ask things like that. And that person is making a huge assumption about me when they don’t even know anything about me and I think… If you wanna know more about chronic illnesses or you want to know more about a specific person’s chronic illness, you know, that needs to be done in a calm environment, where you can actually have a proper conversation. You know, you can’t just expect somebody to distil their whole life story down into one easily digestible sentence for you. 

How much time do you spend daily on rehabilitation or treatment?

So, this actually tends to shock a lot of people, because it’s quite a lot of time. Even though I obviously identify as a writer and a disability advocate, I would still say that my main occupation at the moment is my recovery. So I always start my day with my jaw exercises, which is to help with the hypermobility of my  TMJ Joint, which is the area that connects the jaw to the ear, just there. And I do some mobilisation exercises to warm up my body and make sure I don’t dislocate any joints during the day while I’m going about my activities. I don’t have actual appointments everyday, but I do have physiotherapy appointments about three times a week. I also see a pain psychologist and I have doctor’s appointments regularly, because there are still aspects of my treatment that I’m still figuring out. I also exercise a lot at home to strengthen my muscles, stabilise my joints. A lot of people with the Ehlers-Danlos Syndrome, as you would probably know from Hanna, have a lot of difficulty maintaining muscle tone, but, ironically, it’s really important for stopping the pain or at least reducing the pain. I also have to follow a special allergy-free diet and that takes a lot of time as well, because I have to take a lot of care of what I eat and when I go grocery shopping I have to be really careful about what I’m buying, I plan everything in advance to make sure that I’m getting  decent nutrition without making myself sicker. And I think those kinds of little extra things are often things that are overlooked in terms of, like, the big time and energy drain, like the people with chronic conditions. So that’s why I want to include that as well.

What is something you’re hoping to achieve by sharing your story on social media?

So when I first started @delicatelittlepetal, both  the website and the Instagram page, there were two things that I really wanted to bring awareness to. The first one was that the illness almost always begins before diagnosis and the experience of chronic illness or a disability is equally valid, even if it hasn’t been officially recognised by our often imperfect medical system. I feel like so much unnecessary harm is done through the way that we treat people who are undiagnosed. I do have a little of a first-hand experience of that, unfortunately, and I think it’s really important to make people aware of that, including medical professionals and, unfortunately, sometimes also making people who are already in the disability community aware of the fact that they still have internalised ableism. The second thing is that there are unique challenges that come with managing multiple problems. So, in my case, my primary diagnosis is the Ehlers-Danlos Syndrome, but that often comes with other things and I do deal with a couple of other health conditions, too. And, you know, the challenges that I and many others in this situation face may be different to somebody who is dealing with one, very severe, potentially very life-threatening condition, but they can be just as life-altering On a day to day basis in terms of how they impact, how you have to live your life and how you see yourself and value yourself. So, I really wanted to provide a role model for people with chronic illnesses, especially younger people with multiple chronic illnesses, who felt that they couldn’t  really fit that mould of, like, “disabled inspiration”, because the disabled experience is so complex and while we’re trying to be proud of what we can achieve and what sometimes we are forced to achieve, you know, in spite of all challenges we face, there’s so much more to us than our productivity and we shouldn’t have to prove ourselves as exceptional to justify our existence. I know for myself. I used to be an aspiring musician and I used to look up to examples of classical musicians who lived with long-term illnesses or serious health scares who didn’t “let” it stop them. And it really caused me a lot of stress at times I couldn’t live up to that example that they’d set of, you know, never, ever letting anything get in their way of progression. But now I’ve realised that I’m dealing with very different challenges  and even people who have the same condition can be impacted in different ways. So it’s just not useful to compare ourselves to each other and that’s why we desperately need more diverse disability representation. 

Have you ever noticed that people’s behaviour changes when they’re around you? If so, why do you think that is? 

You know, I think that really depends on the type of a person and how well they know me. So, my close family and friends who know me very well know that my disability doesn’t change the core of who I am as a person. I don’t think they act differently around me. I would say, like, walking down the street I am treated differently, especially now, that I am visibly disabled and using my ability aids, and joint braces. I feel like people do stare at me in the street a lot more, because I think it’s still not very common to see younger people using my ability aids. I know a lot of people don’t like that, but I personally don’t mind it that much, because I feel like just by going outside and living my life I’m really helping to increase representation by showing people that younger people can suffer from disabilities, too, and they can benefit from ability aids. I think that the flip side of that is that sometimes people would treat me with more kindness. I get offered seats a lot more, people open doors for me a lot more, which is obviously really appreciated, but I do wish that we could, as a society, realise, like, a lot of people are fighting the invisible battles and we should treat each other with that level of kindness regardless.

  

Do you prefer when people acknowledge your chronic illness or when they try to act like it doesn’t exist?

I would say, from the emotional perspective, I spent so long trying to ignore or bury that part of my identity and, unfortunately, also being gaslighted by doctors, that it’s actually a huge relief to me when people acknowledge it and accept it as part of who I am. From practical perspective, I know some people think that we should all be treated as equals, no matter what and we should be working towards complete meritocracy, but in my opinion we weren’t all born equal, unfortunately, whether that’s due to our health, social-economic background, education, you know, I don’t want someone to look at me and say “oh, she has a disability, she can’t do this or that” or “she’s gonna definitely need this accommodation”, but acknowledging that somebody has a disability doesn’t have to mean making a set of outdated assumptions about them. You know, the more that we try to stay blind to the things that are making us different, the harder it is when making it for ourselves to actually learn about the reality, about differences and how we can actually break through these assumptions and stereotypes, and end these stigmas to make this world a fairer and more inclusive place for everybody. We all have different skills and needs and I do think it’ll be better if we started finding ways to make sure everyone can be as involved in different aspects of life as possible. You know, I think that it’s a pretty lofty statement to make, but I would love it if as a society, as a whole we could stop seeing an able body person as a default human being around which all societal standards and expectations, and accommodations are based, because there are a lot of different people who are not like that for all different types of reasons and we’re not that much of a minority in the world.

 

Yeah, I agree with you here. The next question is a bit of a sciency and looking into the future like: do you think science will advance enough so that people with genetic and chronic illnesses will be able to function normally or be cured completely? If so, what can we, as a society, do to help scientists make that happen?

I really like this question, because it really made me think and also made me confront some things that I’m not doing and maybe I should be doing more of. I really don’t know if genetic conditions like EDS will ever be curable, because since they are caused by a genetic mutation I don’t know how we could stop our bodies from producing abnormally structured collagen. I don’t know if one day maybe there will be a way to turn off certain genes before the child is born, but I do think it can pretty quickly bring us into the murky waters of things like gene editing and designing babies, and that obviously brings a huge mess of ethical issues with it. But I think regardless of how you feel about all of that, I definitely think it would be possible for us to have more effective, personalised treatment programmes available. At the moment a lot of genetic conditions such as EDS don’t actually have official approved treatments in a lot of countries and we’re left in making our decisions, and doing our research about things, which is a little ridiculous. And I think the main barrier between us and better treatment is almost always funding. It’s a sad reality. We’re either gonna be dependent on government funding or pharmaceutical company funding. So I think that the governments really need to know the huge impact these conditions are having on people. How it limits our ability to contribute to society in ways they care about such as spending and working. How much our care is costing them. Pharmaceutical companies need to know how common these conditions actually are and the huge opportunity it creates for them to work on treatments for us. So what can we as individuals do about this? First of all, I think people who are affected by these illnesses really need to push for a specific diagnosis. So many people are undiagnosed or misdiagnosed for such a long time that we don’t even really have a clear idea of how common somebody’s illnesses are. And we also need to spread awareness. We need to let our family, friends and doctors know about our conditions and how it affects us. You know, regardless of whether we’re diagnosed or not yet. And we need to move away from the idea that these genetics illnesses in particular are super rare, because it’s honestly hard to count the amount of times that people have got in touch with me through Instagram or my website to tell me stories of how their doctors told them that EDS is just so rare and there’s absolutely no way they could possibly have it, when in reality a few years later they’ve turned up to be a textbook case with all symptoms. And I think once we have a diagnosis we need to use all the resources available to us to the absolute fullest. And I know these can be hard to find, so I think contact with good doctors and sometimes non-profit and also governmental organisations may be required. I think if there aren’t many resources at your disposal, consider contacting your local health minister and health department, and maybe also local non-profits, and explain to them why it’s a problem.  If you have a good relationship with your doctor, you may ask them to do the same thing. It’s all about making it really clear that there actually is a demand for more support for people with these conditions. If you have found a specific treatment or medication that helps you and that is not covered by insurance or is not a registered treatment for your specific condition, write to your health department or manufacture of that product and let them know why it’s a problem, so that these bodies become more aware of what we want to spend our money on. And I think the final thing is: keep your eyes open for trials associated with your specific condition. In my case, following groups like the Ehlers-Danlos society has really helped me become connected with these opportunities and I’m sure that there are other, similar groups, if you want to do a little bit of research online and for other conditions, too.

What is one of the most important lessons you’ve learned since the beginning of your medical journey?

I would say that the most important thing that I have learned is how to gradually establish the connection between my mind and body, and eventually get back to trusting my own instincts. My body for example knows when a flare is coming and when to rest. I’ve learned to listen to it in that regard and it’s also helped me figure out which foods are helpful or a hindrance and I've had to learn to listen to that trait. That kind of thing can be really difficult at first. I think all of us, not only people with chronic conditions are constantly bombarded with information about what is and isn’t good for us. Sometimes it’s contradictory. And we’re also encouraged to push ourselves a lot and compare ourselves to others a lot, and we’ve lost the ability to connect to our individual bodies and what they need. But in time that’s got easier for me, it’s helped me to rebuild the trust with myself and rebuilding that trust is what’s allowed me to start trusting my instincts again. So for example, if I feel like I’m not being treated well by the doctor, previously I would’ve stayed, but now I’ll just walk away. I always assumed that the problem was with me. I trust that I know myself and my body. And if they don’t want to listen to what I have to say, I’ll find somebody who will. Similarly, if a psychotherapist wants me to do something that is gonna be harmful to me, I’m gonna say no, because my body knows the difference between the mould discomfort of pushing my fitness limits and the serious discomfort of the oncoming joint dislocation or injury.  

We’re almost at the end, I just have one more question. Is there anything else you’d like to say about living with a chronic illness that we haven’t covered yet?

I think your questions have been really comprehensive and it’s probably been an important discussion here, so thank you guys for that. I don’t have much to add, I would love to repeat what I’ve said before. That illness begins before diagnosis and we have to stop treating people as lesser, if they’re not diagnosed yet, we have to lift the each other up and help each other, because so much unnecessary pain and trauma is caused by downplaying people’s symptoms or by trying to force them to live in a way that doesn’t suit the body that they were born with. This is actually an even more common problem among younger patients, younger female patients and of course patients who are Black, Indigeneous or People of Color. That’s a big part of why I was  really happy to be interviewed by you two today, because I love seeing this fresh, new initiative from really excellent young role models and the fact that you are showing other younger people that disabilities can affect us, too, and even though it can be a really hard  road for us to walk, we can live really full and great lives with our own supplies and treatment.

Okay, thank you so much for the interview. It was a pleasure to meet you. We hope you enjoyed yourself as much as we did. Thank you very much and we hope to see you in the future! And maybe another interview.

That sounds great, thank you so much for taking the time to give me such an in depth interview. Please, follow me on Instagram at @delicatelittlepetal or visit my website delicatelittlepetal.com. All the resources are in there for free and I post regularly about all aspects of life with physical and mental disabilities, but my main focuses are breaking social stigmas, the normalisation of ability aids, greater awareness about invisible illnesses, especially among young women and, of course, the fact that the illness begins before the diagnosis.