Invisible Not Broken - Chronic Illness Podcast Network

An interview with Niko, founder of the chronic illness community and dating app Lemonayde, about dating with chronic illness and his own chronic skin issue Tinea Versicolor.

Name *

Niko Geoffroy

What is your disorder? *

Tinea Versicolor

At what age did your disorder become a daily issue? *

15

Who were you before your illness became debilitating? *

Before my condition, I was already pretty introverted and my skin condition really added to that and made it harder to get out of it.

What would you do if you were not dealing with your invisible illness? *

Since my illness is a skin condition, it is visible. I think all of my adversities are what pushes me to be as ambitious as I am. If not for my condition, I certainly would not have started Lemonayde.

What would you like people to know about your daily life? *

My daily life, especially when it includes any activity that forces me to take my shirt off, is full of a lot of explaining. Our culture is pretty hostile towards skin conditions, in general. The first question they need to know is, "Is it contagious?". Also, the assumption is usually that skin conditions are a result of poor hygiene, which, of course, is just not so. I take these moments to educate.

What would make living and moving in the world easier for you? *

More communities where people feel comfortable to be vulnerable in regards to their health without the expectation of judgement. There's a sense of relief and liberation that comes with being around people who you don't have to explain your health to.

Do you have any life hacks? *

More like mantras: 1) Your disadvantages are actually advantages. Find a way to use them as such. 2) The only two opinions I care about are that of parents. Everything else is noise. 3) Set your priorities and stick to them. Your health should be #1.

What kind of support do you get from family or friends? *

I love my family, they;re incredibly supportive, in that they don't treat any differently. And I pick my friends wisely. They don't see me any differently either. My family and friends know that I'm very independent and if I don't ask for help, it's because I DON'T want it. But if I do ask, I probably really need it.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

I've had moments when people were convinced that my skin condition was due to poor hygiene even though I explained it has nothing to with hygiene. But whatevs.

How has your invisible illness affected your relationships? *

Woo. My skin condition started to develop in High School, which we all know is the most unforgiving place known to man. And with the emergence of a skin condition, that I had convinced myself was unsightly, came the insecurities and self-doubt. I put up a whole lot of walls when it came to social and dating activities. For me, being intimate was pretty much off the table. I didn't want to have to find myself in the excruciating situation of having to explain my skin condition and having the whole world know about it. My first relationship started in college and it was with someone who also had a skin condition (psoriasis). This may sound weird now but I initially fought off this relationship only because I knew she also had a skin condition. I don’t know why, but I guess I just didn’t want to convince myself that I’m only supposed to date people who were “like me” (whatever that means). But I was also keeping myself away from something great. It was just a strange confusing paradox. Fortunately, I lost that fight and we started dating and it was a wonderful relationship. We bonded about things only we would be able to understand. We skipped the whole “worrying about my condition” phase and just went straight to the fun part. We dated for quite a while and eventually moved on, as with most relationships. I did explore other relationships after the first, but it was the first that gave me that initial boost of confidence; validation of my awesomeness; and the relief that all ISN’T lost after all.

Is there anything you are afraid to tell people in your life? *

Very little. I used to be afraid to talk about my skin condition, now I don't care at all. I also used to be afraid to tell people about my undocumented status, now I couldn't care less.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

The first time I saw a doctor about my condition, the first thing he recommended was Selsun Blue Medicated Formula. However, I told him that I've been using Selsun Blue for quite some time with no results and I asked him to prescribe something else. And this guy was just so unbelievably insistent. He told me I had to try it. But I didn't want to spend money on this doctor visit knowing that it would be a waste. And he did not let up. And it was extremely frustrating.

What is your best coping mechanism? *

Mashed potatoes and cookies. Also, I'm a self-healer. I like to do all of my healing and thinking on my own. So I meditate at least once a day.

What are you the most concerned about and the hopeful for in the future? *

This is on a grander scale but I do believe that our society is coming to the realization that empathy is the greatest healing power that's ever existed. My concern is that we will know that and consciously choose not to use it. However, my hope (and belief) is that we will. This can summed by the following lyric: You think the only people who are people Are the people who look and think like you But if you walk the footsteps of a stranger You'll learn things you never knew, you never knew.

What is your favorite swear word?

Clusterfuck

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

I'd like to mention Lemonayde and how and I why decided to created it. As well as the mission behind it. We don't have to get too deep into it.

What is the hardest and/or best lesson your condition has taught you?

My ability to accept outcomes I have no control over. It's also given me the single trait I believe is my superpower... Empathy.

What is the best purchase under $100 that helped your life

Coffee. The book "David and Goliath - Malcolm Gladwell". The book "Our Revolution - Bernie Sanders"

Any questions you think we should add to this list?

"What do you believe is your purpose?" OR "What is the source of your motivation? What's the fuel that keeps you going?"