All is not lost yet

When were you diagnosed with the disease?  What is the disease, how does it affect your body?

I was diagnosed with lupus (Systemic Lupus Erythematosus) in July 2016, at the age of 21, and like many other patients, I didn’t know about the disease before my diagnosis.  Lupus is an autoimmune disease, which means that my immune system does not function properly and attacks my own body— like soldiers vandalising the land they are supposed to protect. This can cause damage to any body parts including organs, skin, joints, blood or blood vessels. Someone whose kidney is attacked by lupus for instance, could suffer from kidney failure, while someone whose brain is affected could have strokes. The symptoms of lupus and their severity are varied, and in my case, I deal with extreme fatigue, joint and muscle pain, mouth ulcers, headaches, nausea, dizziness and fever. Unfortunately, lupus is incurable and its complications can be fatal.

How did you as a young person react to the diagnosis? Did that trigger a change in lifestyle?

To be honest, the first months following my diagnosis were distressing. Managing a chronic condition is like a full-time job and I had to completely reorganise my life around it: understand lupus, recognise and manage symptoms, follow a treatment, deal with side effects of medications… Besides, several factors can trigger a flare up (that is, the appearance or worsening of symptoms), including: sunlight, exhaustion, emotional stress, physical stress, the weather, nutrition, infections and certain drugs. My biggest challenge was to develop patterns to cope with these.

While anticipating medical concerns, I underestimated the personal tumult from being diagnosed with a chronic illness in my early 20s : balancing the desire for independence with regularly having to ask for help, managing finances while saving enough money for a ‘medical emergency fund’, developing long term projects while keeping in mind that my physical capacities could deteriorate at any time, learning to construct my new self between “accept your illness” and “don’t let it define you”… It is a process through which I am still trying to pave my way.

If you were to contrast your life before and after the diagnosis, what are the most significant changes according to you? 

In short, I’m happier.

Lupus encouraged me to be attentive to my body, to listen to its needs and weaknesses, what works for it or not. Besides, with the abrupt realisation that my body can stop “working” at any time, I’m coming to terms with the fact that nothing can be taken for granted and that it is important to savour the small pleasures, to embrace my vulnerability, and to be grateful.

How did the disease affect your achievements so far?

I am not sure whether it had a direct effect on my achievements, but it definitely has changed the way I work on projects. I have to pace myself since pushing myself too hard over a short period of time would cause me to flare up, and I also try to make the journey as enjoyable as the destination.

What are you trying to ultimately achieve now?

As a person, I’m trying to learn and experiment as much as possible in those areas which I consider crucial for my self-growth. Regarding lupus, I strive to raise awareness about the disease and help people get an idea of what it is like to live with it, and how they can be supportive of patients.

What motivates you when you feel that all is lost?

Accepting that the feeling that all is lost is just that: a thought, an emotion. It deserves to be acknowledged rather than suppressed if I want to get past that point. It’s okay to feel that way, and it is not an indication of who I am or where I’m standing.

What are your hopes or fears about the future of young people in Mauritius ?

My hope is that we are able to get rid of that “should” thinking pattern which a lot of us have acquired: we should have graduated by now, we should secure a certain type of job, we should have started building a house, we should own a car, we should be married. This tend to direct us towards standards and expectations which are not really ours, and distract us from what we personally need to feel fulfilled.

 At the end of the day, what does matter according to you?

Personal growth, and moments which make you say “wow”.

Any appeal you would like to make to young people?

Allow yourself to cry in front of Disney movies, thank your loved ones for being part of your life, ask people about their interests instead of their Wi-Fi password, acknowledge your privileges, talk to your pets, drink more tea.

Helena Lutchman for Youth SCEAL

Follow Helena :-

https://youthsceal.wordpress.com/2017/05/26/louise-baby/

https://youthsceal.wordpress.com/2016/09/07/en-gros-cest-ca-ou-rien/

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2 réflexions sur “All is not lost yet

  1. Helena, you are a positive and courageous young woman. Thank you for sharing your struggle with Lupus. Your heartfelt article will inspire others to make the most of their lives whatever their circumstances. Sending love and prayers your way.

    • I’ve known Helena for years. I’ve seen how, learning about the disease, that is, being diagnosed as lupus patient was a real blow to her projects. I’ve also witnessed how she struggles to stay positive. I’m proud of her though I cry for her because I’m her ….mum

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