Karina, a woman with an almost shaved head stands in her garden. She wears a shirt with polka dots and a sweater with skulls.

Over the last weeks, I got many kind messages from followers of my blog, often saying, “The way you handle your life with all your conditions is so inspiring. How do you do this?” Let me try to give you an unfiltered insight into my life during 2020 and until now. 

So how do I do it? 

Well, for the most part, I don’t. I am not any stronger or weaker than any other chronically ill person. Like all of you, I just try to live my life the best way I can. And let’s not forget that social media and blogs are only showing a glimpse of reality. I can decide the narrative. Even on the shittiest of all days, I can put on makeup, take a nice photo, and pretend I am the happiest version of myself on Facebook. Nobody will ever know the truth.

Pretending.

I am very used to pretending. Pretending to be fine, so my family doesn’t worry. Pretending to not be in pain when friends show up at my doorstep spontaneously. Pretending my life is good, and I have everything under control whenever I interview people for my work. Honestly, I probably pretend more than I am my true self lately. 

Pretending to be OK is rooted deeply in my culture. 

I grew up with the belief that showing any weakness is bad. You don’t do that. You don’t cry. You don’t ask for help. You are the person that supports others, but you never ask for anything in return. You don’t say no to helping people, but you always say no if help is offered to you. Over the years, I have learned to accept some help every now and then, but I still try to deal with challenges alone, internally. I often don’t admit that I had a tough time until it’s long over, and I am fine again. 

Well, this approach very much kicked my butt in 2020. The last year has been unlike any other year before for many reasons. 

I was cut off from my support system. 

Shortly after the very first lockdown, I was meant to fly to Germany. I used to go back home every year to see my family and friends and to not lose those connections. They were essential for my well-being, but with the lockdown, my flight was canceled, and I felt trapped. I couldn’t go anywhere, couldn’t even see my friends at a distance because I live up on a fucking hill with public transport being canceled during the pandemic. Due to my safety precautions, I didn’t use Uber, and therefore, I could only reach places I can walk to – yes, you may laugh now. So my movement radius was basically my house and the one mile around it. Well, at least I could get sushi in my local grocery store and wine next door. That was about it. 

Then came the anxiety. 

Gosh, I did not know how anxious I can actually be. I have always struggled with some sort of anxiety around ‘losing control’ over certain things, but COVID was a whole new level of fear. First, there was the anxiety about catching COVID and not knowing what the outcome would be. Would I die? Or would I be an asymptomatic case? And even if I didn’t die from it, what would the virus do to all my pre-existing conditions. I already struggle if I catch a cold. So what would happen if I did get COVID? I didn’t know how I would cope with even more challenges and limitations on top of my regular shitshow. 

Trauma.

Once the initial anxiety somewhat settled and we got used to our ‘new’ life in isolation, I was hit by memories of a trauma from a long time ago that I had suppressed like a boss. Well, I thought I did. I never actually worked through it, though. So it decided to surface with full force, and I was hardly able to cope. I am not ready to share more about this publicly yet. However, it led me to start therapy and work on a lot of issues from my past that I didn’t even realize I had until I began to open up about all of it. Turns out, being doubted and belittled over many years for my chronic conditions and all the small and big issues that arise throughout daily life with EDS did cause some sort of PTSD. Even though I had this mostly under control before the pandemic, the additional stress from COVID seemed to have opened the floodgates, and all of a sudden, really any trauma I ever experienced – I never actually dealt with any of it; I just compartmentalized and put it away in a different place in my subconscious – resurfaced. As much as I tried to push it all back to where it came from, it wouldn’t let me. So I kind of gave up and decided to see a therapist – if you know me and my personality, you know this was a huge step I wouldn’t have considered before. 

For whatever reason, the pandemic has also caused me to adopt a zero bullshit policy, and I basically lost all filters and started to say whatever went through my mind, which was a healing experience. 

Cancer scare. 

It would have been fine if 2020 stopped right there, but it didn’t. In mid-2020, I thought I might die soon from a misdiagnosis of pancreatic cancer. What could have been a week full of fear, ended up in torture for months because my insurance denied me an MRI that I needed to rule out cancer. I fought. I won. I don’t have cancer. But this fight went on for months. Months on the phone with my insurance. Months of feeling like I might not see my 40th birthday. 

I was exhausted. I was scared to death, and all my regular coping mechanisms were gone. So I drank a lot. I gained weight. I ate a lot. I am not proud of any of it. I still kept up my exercise routine and my work, but I struggled to focus on anything. Writing articles took me much longer than usual; responding to emails was a no-go; managing my health was neglected. Writing helped, therapy helped, hiking helped. But it was still very, very hard to bear. I felt like a burden to my friends for having all these needs all of a sudden. I wasn’t the badass Karina that used to just stand up after falling anymore. I basically hit rock bottom and felt like I was drowning. 

Grief.

Additionally, I lost some people I loved a lot, fought with close friends over stupid masks or social distancing rules, and overall, got very upset with many people I cared about over their careless behavior regarding COVID. While I had implemented strict safety measures, they didn’t understand  why and told me to stop living in fear. Many healthy friends couldn’t comprehend how serious COVID was to my health and the health of my community overall, and words didn’t seem to be enough to explain. So I felt quite lonely but couldn’t really do anything about it. My need for safety was bigger than my need for a hug. 

Vaccines. 

Then vaccines rolled out, and at the same time, I learned that I had to leave the US in a few months. This stressed me out a lot. I didn’t feel comfortable going on an international 14-hour flight without being vaccinated, but I didn’t have a choice. By coincidence and through the support of the local disability community, I got my first shot. I was scared it wouldn’t work or that I would react weirdly like I did to so many meds before. But all went fine. A week later, we found out that thousands of people were underdosed due to ‘human error’ a few days after my vaccine appointment. So, hello, anxiety. Nice to have you back. 

Stupid CCI.

Meanwhile, my spinal issues got much worse. My arms tingle and hurt all the time. Whenever I put any sort of pressure on them, they start to shake. Both arms get weaker and weaker, and every time I move, or even just walk for a mile, my neck is on fire and sends me into fits of crying due to the pain. Neuropathic pain is a bitch and barely responds to any meds. This, combined with knowing that I won’t have any access to experts in the future, adds an additional layer to the shitshow. 

What the hell is going on?

In summary, right now, I am handling an international move, my journalistic work, and figuring out how to get the medical help I need in another country (again) while dealing with anxiety, trauma, grief, moderate to severe pain, and whatever new challenge arises. Lately, it seems like there is something every day.

So that’s where I am at. 

I am not strong. I am not a badass. I don’t cope better than anyone. But I do cope in a way. In my way. I am surviving the best way I can. So whenever you feel like other people deal with this situation any better than you, they don’t. They just do whatever they need to do to get through it. 

We all do our best.

What I learned from 2020 is that I am a lot stronger than I ever thought I would be; I don’t have any energy left for pretending; I don’t need to hide my vulnerability because it’s nothing bad to be vulnerable; I can’t suppress feelings because they always come back punching you in the face later, and foremost, I learned that it is OK to be a fucking shitshow because the people that truly love you will understand, and they will support you, no matter what version of yourself you are. And: We survived 2020, so how much worse can it get – let’s not jinx it, though. 

I am not sharing this because I want to be pitied – God, please don’t; I hate pity – but I felt it was time to show that many of us struggle. I struggle. This year really almost broke me, but then it didn’t. I am here. I am getting better. And come on, it’s not that easy to live with a chronic illness in a pandemic. Life doesn’t stop throwing curveballs at us just because there is a pandemic. We face all these issues on top of COVID. And it’s overwhelming and unfair. But it is what it is. 

We all cope in different ways, and I don’t think there are any particular rules to deal with the kind of crap 2020 has put us through. So if you aren’t dealing well with the pandemic, you are likely in good company – I mean, you can always text me; I will understand – and you shouldn’t feel ashamed about it. Take it from someone who was pretty happy before 2020: Shit happens, you are doing your best. You are a fucking warrior. You are a badass. We all are. And as a close friend used to say, “Hitting rock bottom isn’t all that bad. At least you stand on stable ground.” It can only go up from here. 

4 replies
  1. Will says:

    Thank you for sharing. I too have EDS. Many of the things you spoke about resonated with my experiences. Keep up the fight.

    Reply
    • karinabutterfly says:

      Thanks, Will! I appreciate you took the time to read my blog and shared these kind words with me. Hugs, Karina

      Reply
      • Margaret Muhammad-Urban says:

        TY so very much. Briefly I hear & see you & we share common issues. Diagnosis age 50, using Beighton scale by leading US EDS researcher Dr. F., who’s retired now. I haven’t had genetic screening & know it’s needed. Neck instability & C-spine stenosis has surgery down the road. Soon as possible. Saw in another blog you offered assistance to a reader in finding a good team. Help, Living in Florida w/EDS, dysautonomia, mast cells & a plethora of other things. Have been unsuccessful finding neurosurgeon that I trust to fuse my entire C spine & top thoracic. I don’t know how these things work, if you do ever find time to reply. I’m a tech dummy. No matter what I appreciate you & hope you’re coping, as well as possible. Most sincerely Margaret

        Reply
        • karinabutterfly says:

          Hi Margaret. Thanks so much for being here. Would you mind sending my an email? We can talk further there. I don’t know a surgeon in Florida, but maybe I know people who know a surgeon. :)

          Hugs,

          Karina

          Reply

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