Having a chronic illness has completely taken over my life since 2019.
1997
Growing up, I had eczema. It was something my parents dealt with when I was a baby, and by the time I got to kindergarten, it was gone.
For many, that is their experience with eczema. They have it as a child & then grow out of it. Sadly this was not the case for me
2014
When I turned 17, I noticed small bumps on my hands. These bumps formed between my fingers & would get extremely itchy for days on end. Then they would dry & crack for a few days, and then my hands would go back to normal.
This happened every 6 weeks or so, and was starting to interrupt my life / sleep so I started going to my family doctor.
I was told that eczema was normal, it was nothing to worry about & was prescribed topical steroids.
It kept getting worse, and I spent many days in the doctors office trying to get them to listen to how I couldn’t live with my hands in the state that they were in.
At that point I didn’t know how much eczema would affect my whole life.
Looking back, I feel so frustrated that I didn’t get the treatment I needed & despite many requests, my family doctor would not refer me to a dermatologist.
2015+
After I graduated, I went through a long period of time where I did not seek medical attention for my eczema, partially because it was so frustrating trying to get someone to listen to me, but also because there was enough time in between flare ups that it was manageable to suffer a couple weeks every few months.
2019
When I was 22 we moved to Kelowna. This is when things got out of control. To this day I still don’t know what was the trigger to get my skin to where it is today. The environmental change? The stress of going full time with my business? The stress of moving to a new city?
Or simply just letting it be untreated for so long?
All I know is that I went from having flare-ups every couple of months to never having a break.
If you have experienced eczema you know how painful it can be. The itch & fiery feeling is unlike anything else.
The reality:
It affects every part of my life. This is a snippet from what I wrote down for a doctor that still rings true today:
- life is miserable, don’t want to leave the house or socialize
- I hate how I look, has insanely affected my mental health: panic attacks, anxiety & depression
- some days I don’t get out of bed all day because it hurts so much
- don’t sleep
- can’t wear certain kinds of clothing
- difficult to maintain proper hygiene because showering is so painful
- all my sheets are stained with blood
- terrified of anything touching it
- can’t go to new environments because I’m worried about what will happen
- cannot stop itching, makes social interactions very difficult
- this has been a huge strain on my marriage.
- can’t work as much as I need (self-employed)
- strangers asking me why my skin is so red, making comments about what moisturizers I should use
December 2019
In December 2019, I went to the doctor for the first time in about a year. We had just moved to Kelowna so I didn’t have a family doctor. The doctor gave me a raised eyebrow look and told me I just “had dry skin” because it was the fall. I left crying.
This happened two more times at two different walk-ins.
At this point, I wanted to give up getting medical help, but Levi convinced me to try out at least one more clinic.
He also convinced me to let him come with me. I so badly wanted to be independent and be able to figure this out on my own (I also want doctors to listen to me when I say I am in pain & not have to bring a man into the situation but that’s another story), but I also knew I couldn’t leave by myself crying again.
This was the first time when I felt truly heard & seen by a doctor, and Levi didn’t even have to defend me. The doctor that we saw had experience with eczema (his wife had it) and he said right away that I needed help that was far beyond a prescription cream. He referred me to a dermatologist in Kelowna and gave me some antihistamines to help me sleep through the night.
This man HUSTLED for me & got me to see this dermatologist within two weeks.
January 2019
The dermatologist was not the kindest, nor did she spend more than 30 seconds looking at my skin. She prescribed me me an oral immunosuppressant (one they use on cancer patients) and told me to come back in 3-4 months.
Then COVID-19 hit. I stopped taking the immunosuppressant & didn’t go to my follow-up appointment because we were still in weird lockdown mode. By the time I tried to make another appointment, they said I needed a new referral.
I went back to the original doctor who referred me to her & told him about my experience. He referred me to a dermatologist in Vancouver who had a LONG waitlist (that he couldn’t bump me up for) but was apparently very good.
March 2021
In March 2021 we went to Vancouver to see this doctor. She looked me in the eye and said “we are going to figure this out for you”. She completely validated my experiences. My appointment was 45 minutes long and she went over all the different options for me. Right away I was put on the waiting list for patch testing.
The medication we opted to try was called Dupixent. It is an injection that you take every two weeks. I started on this medication in April 2021 and within 24 hours I could feel the difference within my body. It completely transformed my life. Within one month my skin was completely clear. This was a miracle drug, but it came at a very steep cost. It is not covered under any type of government funding. At this time I applied to their compassion program but was told it was a very long process to get approved.
September 2021
By September 2021 I had to go off this medication due to financial reasons.
This was so devastating because of the incredible results I had.
My skin went back to its original state, and I anxiously awaited the call for patch testing. During this time I tried light therapy, but overall, lived in constant pain. Not only was my physical health terrible, but my mental health was the lowest it has ever been.
April 2022
In April 2022, I finally went to Vancouver for patch testing. This was a three appointment process & while they did find 2 things I was allergic to, the doctor told me that I basically had multiple types of eczema, and the major one *needed* to be solved with medication.
This was half encouraging: finally a doctor telling me how it is and not trying to sugarcoat it. The other half felt discouraging because the only medication that worked was extremely unattainable.
May 2022
My prayers were answered when I got a phone call from Dupixent (the drug company the injections come from), telling me that I got approved for their compassion program & I get the medication FREE FOR LIFE!!!
As I write this, there are so many moments I can pinpoint where I remember feeling so defeated. I had taken so much pain & been under so much stress & I didn’t think I could take any more. And I did. It got worse and I still handled it (even if it wasn’t always gracefully). The resilience we have is far beyond what we can comprehend.
I know that this isn’t the end of my journey. This is a new chapter. Sometimes medication is a life-long solution & other times it is there for temporary relief.
All I know is that I am thankful for those who have supported me all along the way. The list is long, but know that I appreciate you all. The ones who are in my day-to-day life, and the ones who have supported me from afar, with kind DMs and prayers.
Photos
The day I found out about my meds, I had my pink backdrop out to shoot some content for our business. I was home alone when I found out, and after calling all my people, I figured I would take some self-portraits to document the day. These will forever be special to me.
Some Videos of me starting my meds:
We are Levi and Victoria. Husband and wife creative team based in Kelowna, British Columbia. We are photographers and entrepreneurs who specialize in wedding photography & helping others build profitable brands in line with their passions.
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