I can hide from the world, but that won’t cure me’, and hiding away is something José Jenik (46) eschews. She may live in a small village in the south of the Netherlands, but this strong woman does everything still within her power to put pulmonary hypertension (PH), a rare disease, on the map.

Blond hair, blue eyes and rosy cheeks, ‘Dutch glory!’ A radiant woman welcomes me into her home. ‘It’s a PR day today.’ This morning José was interviewed by the local radiostation, who feature a remarkable individual on weekdays. Still she is humbled by my request for an interview, ‘there are so many others besides me’. However, there aren’t that many people experiencing the same daily limitations as José: In October 2010 she was told she has pulmonary hypertension (PH), a rare disease. ‘Around 800 people in the Netherlands [a country of over 17 million] have the same diagnosis. You can’t see it on the outside though. That’s both a blessing and a curse.’

‘In principle the disease has no influence on my looks. I do have a subcutaneous pump in my abdomen. If you know it’s there you can see a small bump. The pump provides me with round-the-clock medication. In addition I take pills. There is another type of medication that requires a Port-a-Cath, that’s highly visible as you’re always carrying a pump in a bag. Or when you require oxygen. Thankfully I don’t need that yet. It’s great to not have any bells and whistles screaming that you’re ill. I do have a few scars, one of which you might be able to see in the summer months. I don’t mind. Even when I’m in my wheelchair or mobility scooter, or walking with my rollator I don’t see it when others look at me strangely. The people who are with me see others looking. I don’t notice it. I guess I don’t find it important, I see these mobility aids as a path to freedom.’

Her unblemished face also offers freedom, although she has never tried to hide behind it to pretend she’s healthy. When I ask her what she’s most proud of when it comes to her looks she takes time to mull over my question, ‘I am never that concerned with how I look. If I have to choose then it is my face: my appearance, my hair, what I radiate. More because others tell me that. To me it’s totally normal. I do colour [my hair] though,’ she quickly adds. ‘I also apply makeup. However, if I don’t feel well or am too tired then I don’t bother, and I’ll still go to the supermarket or into town. I really don’t care.’

However, those moments are a cause of concern, ‘when I am exhausted I don’t look after myself as well as I should. That’s how I know I am not doing well. You need to learn to recognise the symptoms of when you’ve done too much and you’re tired. When I realise I have been wearing the same clothes four days in a row I think, gosh, maybe I did a bit too much. Or when I just don’t want to fuss around with mascara etc. Then I know it has been a too much.’ She takes a sip of her coffee as she contemplates her words. It’s not always easy that it’s such an invisible disease, ‘Grocery shopping has become an Olympic endeavour, but I am glad I can still do it myself. I recently went to a supermarket, one of those budget ones that has hardly any space at the checkout to pack groceries. I was making my apologies beforehand, “Sorry, I am just not that fast”. The lady at the checkout responded in a miserly fashion, “imagine being seriously ill,” I responded, “that you simply can not go any faster”. I’d had enough by then. She looked at me and apologised, “you can’t always see on the outside whether someone has a debilitating disease,” I added. I figured that I might as well put it out there, I always try to be respectful of others but I needed respect in that moment. She immediately compromised. Those are the moments that PH’s invisibility isn’t so positive. Thankfully I don’t notice it that much.’

José speaks very openly about her disease, I can ask anything ‘to increase awareness. If I don’t talk about it people may not know PH exists. Because you can’t see it on the outside people soon forget that you have limitations. I try to get out and about when I feel good, but when I don’t I stay at home. So when people see me I am doing well, which makes it tough for outsiders to acknowledge that am ill.’

To reach those outsiders José is working hard ‘PH simply needs to receive more awareness, it needs to get a voice, a face’. That’s a tough task, also as Stichting PHA Nederland [PH association in the Netherlands] operates without celebrity endorsement. ‘There are so few patients in the Netherlands with this diagnosis, and for as far as I know there aren’t any Dutch celebs, or family members thereof that have it. However, other rare diseases such as ALS [approximately 1500 patients in the Netherlands*] and cystic fibrosis [approximately 1530 patients in the Netherlands**] have managed to receive copious amounts of media attention. I don’t know how to achieve that, but I plan to figure it out. I am very open about it on my Facebook profile, and I write a blog on Yoors.

José also strives to support fellow patients, ‘together with two others I am an admin for a private Facebook group just for patients. No matter how much you share, there are things you don’t want to burden your parents, family or partner with, but this group provides a platform where you can openly express yourself. You can really share everything, the others on there experience the same things and can almost complete your sentences. That’s simply a great outlet.’

‘The Dutch Lung Foundation is also publishing a booklet “Living with PH”. I was asked to be featured. I want to raise awareness about PH, so if I need to lend my face for that then I’ll do it. Someone has to give it a voice, a face and a name. Lung rehabilitation centre Schoondonck was also developing a new flyer, normally these feature elderly people, but young people also end up there, so they asked me if I wanted to participate. I immediately said yes, I enjoy it. Sometimes I pay a high price, it drains my energy, but that’s how it is, and it’s for a good cause.’ Taking decisions on how to manage her energy levels is a daily dilemma, ‘my guitar is getting really dusty there,’ she says with a nod to her black acoustic guitar behind me. ‘I also simply don’t get around to things I want or have to do. I need time to rest.’

I ask her which Dutch celeb she’d like to lend his or her name, voice and face to PH. ‘It has to be someone with wit and humour, not all of living with PH is that dark and heavy. The fellow patients I know are all very positive, with lots of humour, black humour mostly but that also plays an important role.’ ‘You’re not your disease,’ I add. She confirms ‘indeed, I have it but I am still José. Others don’t see it that way. For the booklet about PH the photographer told me to look serious, after all I have a serious disease. That doesn’t suit me though! A photo on which I look serious simply isn’t me, but the photographer was healthy and simply didn’t know any better. We have to stay happy and upbeat, have a bit of fun. It is already sad enough,’ she says with a smile.

After spending more than an hour with José I am thoroughly impressed. Her outlook in life is admirable, her perspective on her disease enlightening. For me the search for a famous face to act as an ambassador for PH is over: this radiant and strong woman is the face of PH. No celeb required.

About pulmonary hypertension (PH)

Pulmonary hypertension (PH) is a rare chronic lung disease in which the small arteries in the lungs have become narrow, blocked or destroyed, thus raising the blood pressure in the lungs. As a consequence the heart (specifically the lower right chamber) has to pump harder to circulate the blood through the lungs. Symptoms include shortness of breath, unusually severe exhaustion, palpitations and a range of other ailments. The exact number of patients is unknown, but estimates indicate around between 800 and a few thousand people in the Netherlands are affected. More information can be found on the website of Stichting PHA Nederland: www.pha-nl or the Pulmonary Hypertension Association: https://phassociation.org.