Emotional Rollercoaster

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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“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/

On Fearing the Unknown

On a good day, living with a disease as unpredictable as lupus is energising because it reminds you to live each moment intently. This might mean slowing down and taking the time to savor every minute. It might also create a sense of urgency, the need to rush into anything which appeals to you because you are conscious of how lucky you are to be able to enjoy it now (and that, as the disease evolves, you might develop physical limitations which prevent you from doing it).

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Source: gyuriczart.com

There are bad days though, during which the wolf bares it teeth and dealing with the unknown is straight up scary.

As mentioned in previous posts, several advocates argue that lupus awareness, knowledge and treatment lag behind other diseases… There’s a sense of having been left behind – when most of the questions you come up with remain unanswered, when most websites or flyers you come across describe your disease as ‘mysterious’.

Stats and figures suddenly seem random or ironic – I, as a woman of African descent, happen to form part of the most affected group, the group which develops symptoms at a younger age, the group which is most likely to develop life-threatening conditions. Why this prevalence among colored women? No explanation.

You notice specific patterns in how your body responds to the illness, read plenty of testimonials from other patients who are going through the same thing and yet realise that there is not one single study which backs these observations scientifically.

You wake up to your body doing something new or weird and you dive deep down the spiral of overthinking –  Is it linked to lupus or not? Is it a side effect of my medication? Should I see the doc or just wait a few days to see if it goes away? When you finally decide to go for medical advice, you realise that you don’t even care about how severe or not that thing is – you just want somebody to explain to you what your body is doing right now. And you feel frustrated, robbed of a sense of ownership, for not being able to understand why your body is behaving in a certain way.

You gulp down facts about the most common life-threatening complications, or cases of death related to lupus because you want to be familiar with the many ways in which your body can end up failing you.

And, and, and… you are still left to answer “Nobody knows for sure” when asked what causes it, and a simple “None” when asked if a cure exists.

 

Talking about Lupus

My immediate family members were the first persons to be informed of my lupus and for several weeks following the diagnosis, I did not talk about it to the rest of my family/friends. Unaware of what was going on, they expected me to carry on as usual – demanding that I do things I could no longer afford to, talking about how much of a fool I was for missing out a specific event (not knowing I was too sick to leave the house on that day), thinking that “I’m not feeling okay today” meant I probably caught a cold. Over time, this created a growing sense of resentment and disconnection – I thought they were being self-centered, incomprehensive… It eventually struck me that I was the one being dumb here – how the hell could they possibly guess I was suffering from lupus? How could they know what the disease entails and that I had to make changes to the way I live?

From then on, I took a leap, and during a few days, I contacted the people who are close to me and/or with whom I hang out regularly to talk my disease: telling them what I know about lupus, how it affects me, and how it might change our common habits and the dynamics of our relationships. Regardless of the reactions I received– from sheer indifference to sincere support – this step was incredibly liberating.

My blog was the second big part of “coming out” about this illness and I am overjoyed (and grateful) to see how it opens conversations between me and people who ignore all of this disease, as well as those who are undergoing something similar.

Yet, I’m still working on finding a proper balance when talking about lupus, navigating to find the right content and tone for my message.

To begin with, I’ve noticed that there is a sort of general uneasiness when it comes to talking about diseases. On a few occasions, I casually mentioned my lupus in the during a conversation suddenly felt that I created a sort of discomfort, that it was not the kind of subject which was ‘pleasant’ and that I should not have brought it up at all. Sure, concepts such as “autoimmunity” or “lifelong treatment” are not very glamourous but I sometimes feel that it all stems from the link between illness and death, and the general taboo which surrounds death.

Even when people do want to know about it, I’m not sure about the type of information which I should prioritise. Should I first talk about the broader, medical aspect of it (the immune system, the blood tests, the treatments and so on) or the practical details (such as the symptoms I suffer from, what causes me to flare up, how I had to change my habits etc)? Closely linked to that issue is how and when to switch between talking about my personal experience, to trying to create awareness about the disease as a whole. One such example is when I’m asked how lupus affects my possibility to have children (…). While my initial response would be a truthful “I don’t want to have kids anyway, so that’s not a problem.”, I believe it to be the right opportunity to educate others about how lupus increases the risks of miscarriage or premature delivery and that pregnancy often triggers flares.

On top of that, finding the right words to talk about the severity of lupus is quite tricky. It is important that those around me understand that my case is still mild, that I’m lucky enough to be closely monitored, that I follow a proper treatment and that my last appointment (November 2016) revealed that my organs have not been damaged (woop woop!). Yet, it is equally important to make it clear that lupus can lead to very severe complications (strokes, heart attacks and kidney failures among others), and that deaths from lupus-related complications still occur. When people act like a bunch of inconsiderate assholes underestimate the severity of the illness (despite being provided explanations about it) I sometimes feel like the only way to be taken seriously is to dump all form of diplomacy and tact, to cross out any efforts to reassure them, and to bluntly remind them how severe lupus can get. * On a side note: Jokiva, 21-year old woman from New Orleans, does a great job documenting the physical effects of lupus including hair loss and skin rashes http://bit.ly/2ivhLWJ. Coming across her blog kinda shook me and actually forced me to make extra efforts to manage the disease.

In light of the above, and for a whole lot of other reasons, I believe that asking questions are important.  This of course varies from one patient to the next, but I’m personally comfortable talking about my illness and don’t regard them as an intrusion to my privacy. They help me to give out more specific and appropriate information and it always warm my heart to know that people are taking the time to understand my condition better.

 

Sense of Control

I was (still am?) one of those people who believe that thorough planning is needed for things to go as smoothly as possible.

Blame it on my INTJ personality type ( https://www.16personalities.com/intj-personality ) or having Monica Geller as favorite Friends’ character.

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At some point in time, I grew convinced that proper schemes, schedules and preparation would allow me to not only make the most out of every situation, but also to stay safe- yes, safe. That I could anticipate every little thing which could go wrong and equip myself to face it. That I would feel confident and at rest, enjoying peace of mind from knowing that everything was going to turn out fine because I was prepared.

And of course, it was just the opposite. I was perpetually anxious about not being aware enough, not getting enough done or not meeting deadlines which I imposed myself.

Somehow, and fortunately, living with lupus is progressively challenging the control freak in me.

For a start, avoiding stress is an important part of preventing flares. I had to let go of useless responsibilities, learn to ask for help, and discover that things don’t need to go exactly as planned for them to turn out awesome.

Most importantly however, was the understanding that I was dealing with a completely unpredictable disease, “a volcano”, as my doctor sometimes call it.

No matter how hard I try to figure it out, a lot of things remain a mystery – hours of Googling would still yield results such as or “It is assumed that…but no study proves…” or  “More research need to be done to determine if…” or “…still remains unknown” .

On a day-to-day basis, I try to maintain a lifestyle which will minimise the frequency and severity of flares. But there’s a limit to what I can control and I can never know for sure how I’ll feel on a specific day. If one day my energy levels are at a peak, I might as well have to stay in bed the next. I make weekend plans knowing that I’ll possibly have to cancel them at the last minute.

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In the long run I don’t have faintest idea about how the disease is going to evolve. Will I develop complications? How am I going to be in 6 months, 1 year, 5 years? No clue.

All this was extremely disarming and I still often feel frustrated or vulnerable. On the bright side however, it taught me to live for the moment in a way that no #millennialwellnessguru could ever have. The only thing I have for sure is now, and I’m learning to lean back and enjoy the freedom which comes from the absence of control.