About Me

Hey there!

I’m Helena. In 2016, at the age of 21, I was diagnosed with lupus (Systemic Lupus Erythematosus), a chronic autoimmune disease which causes the immune system to attack healthy parts of the body – organs, skin, joints, blood vessels. No cure has been found for lupus (yet).15895374_1850876968481337_1865242450873531547_n

While I’m still trying to make sense of all of this, I decided to create this blog as a space for sharing — in which I hope to give a sneak-peak of what life with lupus is like, and connect with those who share similar experiences.

I offer no solution, no medical advice, no inspirational message, not even a tiny insight of how severe this disease might be: but I believe that I can still reach out to others with whatever information or experience I have gathered, and that I can receive the same from others.

Disclaimer: You must not rely on the information on this blog as an alternative to medical advice from your doctor or other professional healthcare provider.

7 Ways I’m Taking Ownership of My Illness

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What helps me to approach my disease more positively is accepting it as just another part of me—as valid as my messy hair, my legendary clumsiness or my unconditional love for pizza. It deserves to be addressed and given its own space, and these are some of the ways I’m getting to that :

1. Learning about lupus

While lupus still remains a ‘mystery’, there are a bunch of online resources which document what is known so far. (It is one of the things which make me incredibly grateful to have easy and regular access to the internet.) I try to stay updated about several aspects of the disease including how it affects different body parts, side effects of medications and what researchers are currently focusing on.

Not only did it help me to develop ways to better manage my disease, but— I’m not even sure why— it is also weirdly empowering to know what’s going on, and to be able to explain it to yourself and to others.

For instance, there were times following my diagnosis during which I wished I could get into my own body and see what’s happening in there (Thanks to watching The Magic School Bus as a kid). I had forgotten about that until some time ago, when I stumbled across a Youtube video modelling how lupus ‘works’ and had the satisfaction of being finally able to visualise what happens in my own body.

2. Reading other patients’ stories

For a start, going through social media posts from other patients helped me confirm patterns which I noticed about my lupus but which have not yet been medically proven. One such example is how I had the impressions that my periods could cause lupus flares but couldn’t find a single medical article which proves this to be true. Yet, by going through forums, I read messages from a lot of other patients who also experienced flares during their periods, indicating that this is fairly common.

Another perk of going through articles written by fellow patients is that they tend to cover more practical aspects and emotional aspects of daily life with lupus or another chronic illness. The Mighty is an interesting resource when it comes to that: with articles ranging from how to manage college life with lupus to why dogs are a great source of support.

3. Asking questions

Closely related to my first point about educating myself, is getting actively involved in the process of learning by asking questions. I usually note down questions/issues as they pop up and arrive to my appointments with a list. I’m lucky enough to have healthcare providers who take the time to address my concerns, and who admit their own limitations when it gets into an area of lupus which cannot be explained yet.

5. Proper organisation

Having my own system of medical record allows me to track my health and to be equipped with accurate information whenever I need to see a new healthcare provider. Some of the tools I use include: a diary with daily entries about my meals, medicines, weight, hours of sleep and symptoms; a file containing prescriptions, blood test results and receipts arranged chronologically; my phone, daily diary and desk planner on which I note appointment dates (and questions to be asked during those!).

6. Communicating my needs

Managing my diet, activities, sleep and other parts of my lifestyle are as important as adhering to a treatment to control lupus. It tends to be embarrassing to be the family member/friend who constantly requests “Can we do this instead of that? Because of lupus (…) “, but I’m slowly trying to get past the discomfort and the impression that this makes me a picky/annoying person. It doesn’t make sense to keep quiet about my illness and then be annoyed at people who “don’t get it” (as I initially did) or to simply opt out of certain activities rather than coming up with alternate ways in which I can participate (which I also did): speaking out is therefore a must. Over time, my loved ones have learned to anticipate and accommodate my particularities— another of those little things which make my life easier and for which I’m utterly thankful.

7. Raising awareness

A few weeks after my diagnosis, as I was browsing through ways to cope with chronic illness according to the Acceptance and Commitment Therapy, I came across the sentence “Create meaning out of your pain“. Sharing information about lupus through a blog spoke to me: it gives me another reason to learn about that topic, it can be helpful for both lupus patients and those who know nothing about the disease and— as someone who studied and works in Communications— blogging, social media management and content creation allow me to exercise my skills and do something I enjoy.

It turned out to be a great choice and, to me, few things are as rewarding as noticing that others show interest and want to know even more about lupus. Being told “I went through your post, do you mind if I ask you some questions about lupus?” is always a win!

Lupus and Mental Health

Lupus can be stressful and stress can cause lupus flares.  This simple fact compelled me to reconsider my definition of ‘health’ in favor of a more holistic and inclusive one which takes into consideration its psychological component. This perspective became increasingly relevant as I came across a surprising number of social media posts from fellow lupies who were mentally hitting rock bottom as they battled the disease.

From what I have gathered, below are a few of the ways lupus can have an impact on one’s mental health:

  • Living with a Chronic Illness 

Over the years, several researches have established a link between chronic illnesses and depression and/or other mood disorders. According to the Lupus Foundation of America, 15-60% of people with a chronic illness will experience clinical depression, the most common cause being “the emotional drain from the stress of coping with the complications of physical illness. Add to that economic, social, and workplace concerns.”

One notable pointer is the process of grief (Denial, Anger, Bargaining, Depression and Acceptance) as one experiences the loss of the former ‘healthy’ self.

Other sources highlight the way chronic illnesses can limit one’s involvement in rewarding activities (For instance: Lupus photosensitivity = Not being able to spend too much time outdoors during the day. Unexpected lupus flare up = not being able to attend social events which were planned a while back).

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  • Lupus Can Affect the Central Nervous System

As lupus can attack any part of the body, including the central nervous system, brain involvement can lead to depression (amongst other disorders such as mania, schizophrenia, and psychosis).  Other cognitive dysfunctions can occur, including confusion and memory loss.

  • Side Effects of Medications

Several medicines used to treat lupus – from Prednisone to painkillers – have been shown to affect the mood and sometimes cause depression.

About Stigma…

There’s a common misconception that seeking professional psychological help is a sign of weakness and the inability to take charge of your life.  Ideas such as “It is your mind, you are the only one who can sort through it.”, “Since you’re going to have this disease for your whole life, you need to toughen up and get used to it.”, “There are people who deal with worse problems than yours, and they do it on their own.”

Unfortunately, the taboo about mental health issues (like many other taboos) only worsen the situation by making people hesitant to reach out for professional help.

Cognitive Behavioral Therapy is currently helping me to see things more clearly, and tame that irrational fear of life-threatening complications, the frustration of having to give up on some activities, the anger of my body not living up to the expectations of my mind… I cannot stress enough how important it is to accept our own limitations in dealing with these challenges, and how there is nothing shameful in seeking professional assistance.

My Lupus Kit

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(From left to right, top to bottom)
The pills I take everyday: Plaquenil, Prednisone and Vitamin D supplements.

Health diary: With daily entries to track what I eat, what medicines I took, other factors affecting my health (stress, the weather, lack of sleep), and my symptoms

Health file: In which I keep all my blood test results, prescriptions and other medical paperwork.

Hot water bottle: To help with joint and muscle pain.

Painkillers: Duh.

Thermometer: To monitor fever during flares.

Oral cream: To treat mouth ulcers

Mosquito repellent: Since my immune system is ‘hyperactive’, insect bites provoke severe and prolonged reactions.

Sunscreen: As sunlight can trigger a lupus flare.

The Bright Side of Chronic Illness

Being chronically ill is a sort of perpetual upheaval in which unexpected physical changes are accompanied by their load of anger, confusion and fear. Yet, through all of that mess, my illness is also causing my perspectives to shift on several levels, and is helping me to grow in ways which I would not have suspected. Above all, it is a process of learning, changing, discovering and finding reasons to be grateful:

  • Living more fully

Having your health at stake forces you to develop a clearer sense of priorities – defining what are the things which matter to you and make you happy, and progressively drawing boundaries to keep away from the petty, toxic and unnecessary ones. Your well-being climbs up to the top of your priorities.

You also become greedy for life, seeing it as a one-way ticket for a trip and wanting to make the most out of it. And because you abruptly realise that nothing can be taken for granted, you learn to savour the tiniest things and allow yourself to feel more deeply.

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  • Redefining relationships

As you are limited in physical and emotional energy, you instinctively distance yourself from people who are not worthy of your time. Besides, talking openly about your illness exposes the vulnerable, not-so-glamourous parts of you, and invites people to decide for themselves whether they can deal with that, and how far they want to be involved with you or not. Progressively, your circle shrinks, and you are left with the ones who are ready to stick with you, who care and on whom you can rely on.

And as you have this growing notion of how fragile life is, you’ll find yourself cherishing quality time with your loved ones, craving honest conversations, hugging more often and knowing how important it is to let others know how you feel about them.

  • Learning to love your body

It might not function properly, and people will always remind you that it doesn’t look as good as the general beauty standards expect it to… But that body is a fighter: battling everyday against an illness which doctors, scientists, researchers and all the brightest minds still struggle to understand. Even when it is exhausted, it refuses to give in to your disease, and that alone is enough to make it worthy of love.

  • Fragility breeds strength

Managing your disease requires you to be cautious about things which appear insignificant (not to say ridiculous) such as avoiding the sun, not eating spicy food or making sure you don’t get bitten by insects. While this can leave you feeling frail and tiny, your illness will also make you disciplined, brave, and resilient.  And regardless of how often you’ll think “That’s too much” or “I’ll never get used to that”, you’ll find unsuspected resources within yourself to deal with whatever lies ahead.

  • Being your own advocate

Living with an illness which is unknown by many implies that you will have not only to explain but also to argue – making it a point to state what things are right for you and what makes you unwell, saying no when needed, hustling and changing things around to create more comfortable patterns in your environment, re-asserting the validity of what you feel when they are imperceptible to others, and too often, having to challenge negative assumptions about the way you live (“I am not just lazy, lupus fatigue is one of the most common symptoms…”). You will find yourself able to communicate your needs more clearly and having the opportunity to educate others about your condition.

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The Road to Diagnosis

June 2015:
I notice that my shoulders and wrists have been making weird ‘snappy’ sounds when I do certain moves (such as rotating them) and after some time, I book an appointment with an orthopedist. Following the consultation, a few blood tests and two MRIs, I am diagnosed with Joint Hypermobility Syndrome, a  condition which implies that my joints are too flexible and can extend beyond the normal capacity.

However, my condition is not painful or severe and at that time, there is no need to start any treatment. I am told to have the same blood tests again in six months, and come back for another appointment to check how the rheumatism is evolving.

January 2016:
As advised, I repeat the blood tests for the rheumatism but one of them indicates something which is out of the normal range.  The laboratory recommends two other blood tests, and they also indicate unusual results. At this point, the orthopedist refers me to a rheumatologist.

February 2016:
First appointment with the rheumatologist who reveals that those blood test results usually indicate lupus (Systemic Lupus Erythematosus). Yet, I have no other symptoms of the disease and thus cannot be officially diagnosed as such. (4 out of 11 symptoms are usually required for a diagnosis).

The doc’ concludes that I am prone to developing the lupus and while I should take several precautions (such as avoiding exposure to the sun), at this point, he does not recommend starting any treatment. Since lupus medication can have serious side effects, it is not advisable to take them unless really necessary. He further proceeds to explain to me the symptoms of lupus and asks that I come to see him immediately if they start to appear.

On the other hand, he notes that I have a mild scoliosis, meaning that my spine slightly bends to the side.

July 2016:
Without any apparent reason, I start feeling quite unwell:  achy joints and muscles, fever, mouth ulcers, nausea, dizziness, extreme fatigue… I spend most of the time in bed or curled up on the couch, realising that these might be symptoms of lupus.
A few days later, I see the rheumatologist and he confirms that “the lupus is getting active“.

That was the turning point: pills, lifestyle changes, regular blood tests, appointments, new symptoms, side effects from medication, emotional ups and downs, this blog…

Lupus is often nicknamed ‘the great imitator’ for the way it resembles other diseases and is often mistaken as such. I consider myself as being among the few and very lucky ones who were diagnosed early, as opposed to lupus patients who suffer for years, going from one doctor to another, before being finally able to put a name to their condition.

“Heavy” by Hieu Minh Nguyen

The narrow clearing down to the river
I walk alone, out of breath

my body catching on each branch.
Small children maneuver around me.

Often, I want to return to my old body
a body I also hated, but hate less

given knowledge.
Sometimes my friends—my friends

who are always beautiful & heartbroken
look at me like they know

I will die before them.
I think the life I want

is the life I have, but how can I be sure?
There are days when I give up on my body

but not the world. I am alive.
I know this. Alive now

to see the world, to see the river
rupture everything with its light.

Copyright © 2017 Hieu Minh Nguyen. Used with permission of the author.

https://www.poets.org/poetsorg/poem/heavy

https://www.hieuminhnguyen.com/