Do I Deserve My Chronic Condition?

In March 2021, the amazing Dissonance Magazine published my very personal essay about my life after being diagnosed with type 1 diabetes and how the idea that I deserved this diagnosis progressed and affected depression and anxiety. Since Dissonance Magazine unfortunately had to close their website, you can read my essay in the folloowing.

Do I Deserve My Chronic Condition?

I stay in a spacious six-bed dormitory in a pier-side hostel in Brighton when, upon my

return from the Seven Sisters, one of my roommates, a middle-aged African-British lady,

engages me in a conversation. She tells me that the wealthy family she works for are

renovating their sumptuous seaside house, but do not have a bed for her at their temporary

accommodation, so she is spending her days reading in the hostel room. Quite quickly during

our conversation I pick up that she is very religious. “But the Lord knows what He’s doing”

she comments on her current situation, and “He will make it right”; He is always with her.

Then she continues: “I noticed that you are not doing too well.” Indeed, I feel a little feverish

and try to suppress my coughs during the nights to not disturb my roommates. Paracetamol –

thankfully cheaper than anything else in UK supermarkets – is my daily bread on this trip, and

I am so damn exhausted, but then again I am also covering so much ground in my exploration

of the Southern English coast that it is only natural that I am so fatigued.

“Oh yeah, it’s just a little cold”, I reply and shrug my shoulders.

She smiles kindly. “God gives us what we deserve and what we can handle. He

constantly tests us. Health is the highest good, darling, so take good care of yourself,” she

tells me. I smile politely, unsure of how to react and just say “Yes, that’s true, very

important.” But I think to myself ‘Come on, don’t make this about god and merit, it’s just a

little cold’. Later, I pop another Paracetamol.

The encounter slips to the back of my mind as soon as I leave.

Four months later I get diagnosed with type 1 diabetes, a chronic auto-immune

disease. From that day on until the day they find a cure – which probably won’t be during my

lifetime since they’ve been looking for that for over 2,000 years – I will have to care for my

body every hour of every single day, take medication in form of insulin injections, see the

doctor regularly and live with short- and long-term complications. And, as I pick up along the

way, there is a large number of misconceptions about the disease. I did indeed not get my

diabetes from eating too much sugar as a child.

I have always taken good care of my body, comparably. I feel unjustly damned. Why

exactly me?. I don’t do drugs, I don’t smoke, I’m never pissed as a newt, I walk a lot out in

the fresh city air, I don’t eat junk food before 12 am; yet, my body decided to attack itself and

give up a very essential part of its job. Or was it some higher being that decided this?

Until that August morning my life has rarely any drama; nothing worth mentioning

really and only ever self-inflicted, I am told. I am privileged, very much so. I come from a

stable, upper-middle-class family, grew up in a pretty pale-yellow house with a little castle-

esque tower, a spacious garden and a fireplace in a sheltered town in the lesser known parts of

good old Bavaria. I always had excellent grades in school, nobody had died unexpectedly so

far. I shouldn’t have anything to complain or distress about, nothing gives me the right to. I

never have anything to properly validate that all-encompassing gloom and that terrifying and

re-occurring sense of futility and numbness besides my own ingratitude for everything that’s

been provided for me.

So here I am, with this new and complicated disease and besides figuring out how to

treat myself correctly in order to survive every bloody single day, I also have to figure out

how to live with it. I notice people are overwhelmed by the mere information. It’s not like I

am asking them for help with my treatment, but I am, at the same time, asking them to treat

me kindly. I am throwing it out there in their faces, as if it is some kind of legitimisation for

my irrational behaviour. It is this attribute that makes me special, distinguishes myself from

them and the thing that makes me deserve their kindness and consideration. And their pity.

Be nice, she’s the girl who got diabetes. The sick one.

Eventually, I am using it as my go-to excuse:

“I can’t go swimming today because my diabetes might unexpectedly interfere”.

“Oh, I’m pissed because my treatment isn’t working the way I hoped”.

“I don’t think I can come on this spontaneous trip because my condition requires

intensive preparation”.

For a while, it becomes all about my condition; I become my entire condition.

Three weeks after diagnosis, I sit in an airplane from Berlin to London to study abroad

for a semester. I was never afraid of going anywhere, living somewhere else, I had done it

before. My very supportive doctor gave me the OK to go, she was sure I’d figure it all out in

time, and I could send an email with questions any time. But you cannot study everything

about diabetes in three weeks. There is no ultimate formula on how to treat it. It takes a

lifetime. Most of it is learning by doing, getting to know your body, adapting to individual

situations. It includes failure, miscalculation, relentless discipline. Which all is something

nobody really tells you in the beginning.

Hence, I find myself alone in a dressing room at Marks & Spencer’s with a low blood

sugar, panicking and thinking Well, this is it and Nobody knows what’s wrong with me. I don’t

know yet that a low blood sugar can very much feel like a panic attack. I find myself crying

silently in the dingy stalls of a nightclub as I inject another needle with insulin, spending night

after night wallowing in the misery of never having a break from this fear for life again.

I completely indulge in the question of why me?. It gradually mixes with all the

feelings I’ve been having for a long time. This was bound to happen. I am somewhat aware

that there is so much worse out there; it could have been a lot worse for me, of course.

There’s always worse. But frankly, I don’t feel any relief or gratitude.

I am still alive, I’m told, and once adjusted I will be able to lead a relatively normal

life, just like anyone else. ‘No’, I think. But everyone has got their package, so I don’t object.

I’ve had a good run until now. Eventually something in life must throw you off and my life

had been so full of privilege that I figure this is my life’s burden now. I’d gotten everything I

wanted until here; I goddamn deserve this.

Exasperation and desolation bundle up in a huge pile of rational and irrational fears.

Most of the time, I am anxious because my condition could easily kill me at any point – most

distressingly during my sleep, and from this very real thread it easily spirals into absurdity. I

try to keep a straight face, but every once in a while, when I let my guard down and the

anxiety shows its real face, it is, of course, because of my condition. Just sometimes it

actually isn’t.

I feel incredibly alone. Nobody can possibly understand this. Nobody I know is going

through this – and I am convinced that the only reason people will acknowledge my sudden

outburst in tears or panic is when I allocate it as symptoms of the pain my disease triggers. In

vain, I fight misconceptions and repeatedly have to advocate for myself: this is not just simply

injecting insulin with your meals; it is a serious, life-threatening and never-ending situation

that requires constant monitoring and that I am supposed to live with now while acting like

any other twenty-something. I use it to my advantage that nobody ever dares to cross the

fragile lines of the house of cards that I’ve built around myself. Nobody knocks, nobody

questions my reasoning because nobody is ever educated enough to grasp the scope; and see

that maybe I am focusing too much on my mortality.

I continue brick by brick. My lines blur. I cannot decipher anymore when it really is

my condition keeping me from doing something, slowing me down, pounding for attention

and care, and when it simply serves as an excuse for my unwillingness to engage with people

or emotions. The contours within myself become less and less transparent; all feelings are

buried within my illness. I constantly wonder: Am I this way because my body isn’t doing its

job? Is that emotional wreck the real me or the new me?

It must be the disease, because I never used to be this way, or did I?

As time and life with type 1 progresses, I notice people’s irritation. My family and

some friends are torn between accusing me of being too dramatic and actually being very

worried, so eventually I stop making noise – When I’m struggling, I swallow it. When I feel

offended, misunderstood, disadvantaged, lonely, scared, upset, excluded, rejected,

overlooked, impaired, I swallow it. I can handle this on my own, this is my encumbrance; this

is the package I deserve. My pain is not valid anymore. It was valid for a brief moment after

diagnosis, but it means nothing in the vastness of human suffering. By this point, I should

have come to terms with my fate. The world is screaming at me: Get over it!

I meet someone and we spend halcyon days until I become acquainted with his

depression. Our relationship becomes a four-way. He accepts me with my condition, and I

accept him with his. But still, we end up in a vicious circle. We are both avoiders. We don’t

talk about our sentiments to each other; we genuinely enjoy each other’s company, share, talk

about our conditions and yet, miraculously, we somehow stave off talking about us. I never

confess ‘I am angry at you because you disappointed me’, but say ‘Oh it’s my disease, that’s

why I’m upset right now.’ We both struggle with our individual illnesses, and we try to

support each other, but sometimes, consciously or unconsciously, we use it to keep the other

one at a distance.

By this time, I have begun therapy. My therapy is supposed to be about my living with

a chronic illness, but this is only the tip of the iceberg. It genuinely irritates me that my

therapist keeps asking me “How do you feel about this?” when I tell her about a particular

situation with someone.

She tells me that depression in its core often originates in suppressed aggression, and I

barely ever feel angry. Or so I thought. My therapist gradually teaches me anger. Letting out

fury is not something I picked up in my childhood home. I don’t have fights, period. And with

time, I realise that I am someone who has an excuse for everything other people do to her. I

try to meet everything with empathy and understanding. I am someone who thinks everything

that happens to her is deserved. I assume that there must be a legitimate reason for any person

to act like this. I presuppose that everyone has got a motivation, but no bad intentions; and the

only person who does not have a proper truthful motive for her ire, disappointment and

sadness towards anyone is me. The only reason that would justify the sheer absurdity of me –

me with my oh so wonderful life – feeling dismal is a diagnosed, scientifically proven reason,

a ‘proper’ illness, and I got that now.

People with diabetes are twice as likely to develop depression and/or anxiety.

Depression can be a side effect of living with any chronic condition. But a diagnosis of a

chronic condition can also consolidate an already existing depression.

After a sudden and excruciating break up, I despair knowing that my affection

couldn’t fix neither him nor myself. I don’t even realise how deep I’ve sunken into an

entanglement of all these illnesses until I find myself playing with the thought of abusing my

life-saving – and if taken in overdose simultaneously life-endangering– insulin, only staying

sane as the helplessness in my mother’s voice on the other end of the phone guides me back to

reality.

Later, as the fog lightens, I’m shocked as to how far I’ve lost myself, and only as I

understand that some kind of depression has been with me for a lot longer than my physical

illness, can I begin to untangle the mess. I can separate my emotions into people-related, self-

related, and condition-related and by doing that I realise the life-affirming, adventurous part

of me has not left, but had been smothered by all these changes. I learn to define my lines, so

that I can live my life with a chronic condition just like anyone else with a chronic condition.

I meet other type 1’s and don’t feel as lonely anymore. There are people out there who

understand, who make little inside jokes about it, who know the agony, who share the

chagrin, and in this scope my feelings are valid. I can whole-heartedly scream This damn

sucks! and I am heard. These people do not only agree but comprehend. I am allowed to feel

this way, and I understand that none of these amazing, strong people deserve this – including

me. Nobody deserves anything that just happens to them. Why me? becomes Why us? and

thus gradually loses its overarching power over me. I no longer use my condition as a shield. I

push myself to strive for everything even harder. It takes incredible strength, time and

perseverance, and comes with frustration, defeat and occasional surrender.

The auto-immune reaction that triggers type 1 diabetes can be caused by a variety of

things. Sometimes by simple infections, a mere cold. In the months after my trip to Brighton,

I begin to lose a lot of weight. I am constantly tired, dehydrated and keep drinking water,

lemonade, juices, anything to give me energy. My body is starving. I keep adding sugar; I eat

more than ever, and I look at a skeleton in the mirror, wondering, justifying everything with

summer heat and stress.

Turns out, these are typical symptoms of untreated type 1 diabetes.

And then, sometimes I wonder, maybe someone gave me little head’s up that I will be able to

handle this.