*This interview article I organized was recently published on the rare news site Patientworthy on February 11, 2019.
One of my better friends within the Cystinosis community is Mika Covington. We met at a Cystinosis event in 2016. I had read some of Mika’s entries posted in her blog, In the Eyes of Mika, prior to meeting her face-to-face. I found her writing to be insightful and refreshing because she addressed topics I had an interest in and wanted to learn more about.
Recently I asked Mika if she would be willing to answer a few questions about herself for the rare disease community and for others in the Cystinosis community. As a self-appointed rare news curator for my own blog, I wanted to see more perspectives lifted up among the rare. I also want the rare community and the general public to be more aware of intersectionality among people living with rare disease in their bodies.
Rebekah P: Tell me your diagnosis story. At what age were you (or your parents/caregivers) told you had Cystinosis?
Mika: I was diagnosed with Cystinosis at around 10 months old. I was informed of my diagnosis at around 5 or 6 years old. At that age, I was informed that because of the Cystinosis I most likely would not reach the age of 20. Today, I am 27 years old and next month I will reach age 28 years old.
Rebekah P: Tell me your coming out story. At what age were you self-aware of your gender and/or sexuality? At what age did others perceive/assume your gender and/or sexuality?
Mika: I am not sure at what age I became self-aware of my being transgender. However, it was in the third grade when I first realized that I was different. Maybe the following might help provide some perspective.
In the second grade, there was a fellow boy in my class. We were good friends. We frequently played at his house and during recess played together. It was during this time that I was bullied nearly every day for a multitude of issues including side effects from the Cystinosis medications. This friend, on one of those occasions, stood up for me. He hugged me and told me, “Don’t cry, I won’t let’em hurt ya.”
At that age, I did not think or realize that I was different. I did not think that there was anything wrong with me. I had no understanding what gay or transgender (I would not learn of the word transgender until high school) meant. I was just being a kid and this friend was my best friend, that was all I knew at that time.
Later, my family and I moved to Wahoo, Nebraska and I never spoke to him again. It was in Wahoo, while I was in the third grade that I for the first time heard the word ‘gay.’ I didn’t understand what gay meant, other than it was an insult. Within a sort time, my fellow classmates called me gay and sissy. I did not act the way that they perceived a boy should act. Around the end of that school year, one of those classmates called me a ‘faggot.’ Again, I had no idea what the word meant other than it was similar to the slur gay.
In the fourth grade, I started to think that I must be gay since I did not act the way other boys did. This was also the year that I started to think that I was being punished for being different and depression began to set in. I thought that if I were just more faithful in God and became a so-called better Christian that these behaviors and feelings would go away. I was in this mindset for years.
It was in my sophomore year at Wahoo High School that I came out as gay. I thought that I must be gay since that was what everyone continued to call me, including members of my family and friends. I still at that time had no understanding what transgender was. Therefore, I associated my gender expression as a variant of being gay. It was only after moving to Omaha, Nebraska and beginning school at Millard South High School that I learned what transgender was and I started a self-evaluation of my past and my psychological being.
On 11 October 2009, I came out as transgender. The place I felt the most comfortable being myself was at work at JCPenney. There I had protections and was able for the first time be who I always was.
Rebekah P: How has the medical/health care system viewed you as a person living with a rare disease and as (your gender/your sexuality)?
Mika: In 2011, I needed a kidney transplant. Therefore, I went to the Nebraska Medical Center (now known as Nebraska Medicine) to be listed and begin hemodialysis. It was there that I first experienced discrimination in the medical field for being transgender.
For example, on several occasions while sitting in the waiting room at the transplant center, the transplant nurse coordinator would call me by my deadname (at the time it was my legal name) and male pronouns. This was even though after my initial appointment I had asked the team to use my preferred name and preferred gender pronouns. They claimed that legally they were prevented from doing so.
I knew better than to take their word for it. I had done my research. There was no federal, state, or local statute prohibiting them from calling me Mika or female pronouns. For that matter, there were and still are no laws in Nebraska prohibiting discrimination based on gender identity, thus I had no recourse to fight the discrimination.
This disagreement spilled over into affecting my healthcare. The transplant team on two occasions had scheduled the transplant surgery (I had a living donor), then the day before the surgery and after going to all of the pre-operative appointments the team canceled the surgery.
The first time this happened, was in the summer of 2011, and the transplant team claimed that they could not do the surgery because I was not compliant. They added that they thought that I was not psychologically fit to go through with the transplant. They decided that I had to go through six to eight months of psychotherapy before they would consider me for transplant.
After six months of psychotherapy, they reluctantly scheduled the surgery for December 2011. Again, the day before, I went to all the pre-operative appointments and afterward the team said that they had to cancel the transplant. I was sent home without a specific reason. I did not hear from them for over a month.
In February 2012, I received a letter from the hospital informing me that I would not be able to receive treatment at the Nebraska Medical Center and thus would need to go to a different center.
Another more recent example is from my last visit to the National Institutes of Health (NIH). I went to the NIH for my two year follow up. Unfortunately, the NIH had not updated their records. Therefore, upon entering the NIH campus at the security checkpoint, they were confused about my gender and name. I had legally updated my name in 2014. The NIH had my deadname. My state issued I.D. said Mika, federally I was also Mika but not at the NIH. Thus, I was forced to stand there in front of a dozen or so people also attempting to go through security and explain my situation. The security workers refused to print my day pass in my legal name and instead printed it in my deadname.
Therefore, when I signed in at the clinic, I was forced to sign in using my deadname and when the clinic nurse called, she called for, “Mr. Covington.” I was humiliated as I approached her. I stood there in front of her and the lobby. She asked, “Who are you? Can I help you?” I replied, “I am the patient.” She didn’t believe me. Instead she spoke a bit louder and looked around me asking, “I am looking for a Mr. Covington.” Again, I said that is me. She stood there looking me up and down becoming very rude and defensive. She asked for me to show her my I.D.
Of course, the I.D. had Mika and not the deadname because I was able to legally change it. She forced me to stand there in front of the lobby and explain to her that indeed I am the patient and that the NIH had not updated their record and that I am transgender. Again, I was provided no privacy to discuss my situation.
Throughout that visit, I was called by male pronouns even after I had asked to be called by female pronouns. This has been a reality that I have faced nearly everywhere I go to receive healthcare.
Very recently, I went to my primary care physician in Des Moines, Iowa and I was prevented from seeing the doctor because of my gender. The person working the desk did not understand that I am transgender and so after he checked me in he went to speak with one of the nurses because my health insurance said male, however I do not look male. Thus, when he returned about ten minutes later, he informed me that he needed to reschedule the appointment because I was over fifteen minutes late for my 8:20 am appointment.
I confronted him about this and pulled the appointment card out of my bag which clearly stated that my appointment was scheduled for 8:30 am and I had arrived at 8:34 am. He proceeded to tell me that no it was at 8:20 am. So, we went back and forth. This appointment was on 8 January 2019. To this day, 24 January 2019, I have been unable to see my primary care physician.
There are so many more examples I could share.
Rebekah P: How has the rare disease community in general viewed you as a person living with a rare disease and as (your gender/your sexuality)?
Mika: The Cystinosis community has not been receptive of me because of what I perceive as hostility because of my being transgender. Frequently my ideas have been ignored.
As an adult living with Cystinosis, I feel excluded and unwelcome. It feels as though the current organizations that purport to be working for all those living with the disease only care about the children living with it and not the adults who have paved the way for their children to live better and longer lives. It seems that anytime I bring up issues unique to the adults, I am ignored or just given lip service, and nothing is done.
I would like to be more active in the community, but I have been made to feel as though my experience and skills are not wanted.
Rebekah P: As a legally single adult living with Cystinosis, what would you like to see in regard to the rare disease community garnering awareness and advocacy for adults living with rare disease? What would you like to see in regard to awareness and advocacy for adults who are LGBTQIA and also live with a disability?
Mika:I would like education and awareness spread on the real experiences of the adults, including the good, bad and ugly.
I look forward to the day when we, adults living with Cystinosis can have open and honest conversations on the myriad of issues we face, including but not limited to sexuality, emotional health, financial, health insurance, and death.
Furthermore, we need an organization and/or program that focuses on providing real peer-to-peer support, not just a program where the adults are expected to provide mentorship to the youth with the disease or just splash unicorns and rainbows over our issues so that we only talk about how life is great, and everyone is happy all the time.
For those of us who are LGBTIQA+, the rare disease community including the Cystinosis community must include us. We are here, and our lives and experiences are just as valid as heterosexual cisgender people.
We must not be excluded from the organizations because some people may be offended by our existence.
The time is over for the organizations telling us that we should hide a part of ourselves to be able to participate. I cannot be the only transgender person in the Cystinosis community or rare disease community. And I am sick of being made to feel as though my life doesn’t matter.
Rebekah P: I have heard the term “stealth” used before for those who are transgender but pass in general society under the assumption they were born biologically the gender they appear to be. I am under the impression this is for many reasons, among them the person who is transgender is concerned for their public safety. Tell me about your experiences and why you publicly identify as a transgender female who also lives inside a rare body because of Cystinosis.
Mika: Yes, many transgender people strive for and work hard to become stealth.
I believe that this is because society tells us that certain bodies and genders are more valid than others.
We are told this nearly every day. It is a message spread everywhere from T.V. to social media to the news. We are constantly bombarded with this archetype of what an attractive person is whether they be male, female, intersex, transgender, agender, or genderqueer. We are told and shown that we must be a certain weight, complexion, or socioeconomic status to be attractive.
Frequently, when we do see non-cisgender persons, we are shown a person who has had the privilege of having gender affirmation procedures done. The media very rarely shows us a person before or during that process. And we nearly never see a non-cisgender person who expresses themselves without personally needing to have any gender affirmation procedures.
Therefore, I believe people strive to be stealth or pass because we are taught that it is more acceptable and because we do not want to face discrimination, harassment, and or violence. I must admit, I have fallen into the mindset that not appearing transgender is more desirable.
Here is an example of the psychological effects of society on our well being and minds. Because I have not had the ability to have any gender affirmation procedures, I struggle to form intimate relationships. Even though I was born as what many in society would consider a male and even though I am transgender, I am not gay, as in I am not attracted to men who like men. I am heterosexual. Gender identity is separate and different from sexual orientation. This alone has had a major psychological toll on me.
The following is how I attempt to explain so-called gender dysphoria. It is like an immeasurable and indescribable self-hate. Hate because I feel that everything about me is wrong and I would rather destroy my own body because of how it disgusts me. It destroys my life; it hurts everything from my academic performance to my intimate relationships. I have trouble relating to people and completing daily tasks at times. Everything it is to be a human becomes hard if not impossible.
I do publicly identify as transgender because it is a part of who I am. I cannot hide it.
I guess I could try to. However, I am outed frequently. I am outed whenever I must show my I.D.
There are days where I desperately wish I was normal and was not transgender. But I am. I feel that for change to happen someone must stand up and if not me, if not now, then who and when.
In rare news…
- Stem cells and gene therapy worked in mice models living with Cystinosis: tissue degeneration was prevented. The disease Friedreich’s ataxia (FRDA) saw progress in their mice models as well. Dr. Cherqui has hopes of a potentially transformative gene therapy for those living with Cystinosis. Avrobio, Inc announced an investigation gene therapy candidate for Cystinosis to begin phase 1/2 clinical trial by the FDA. Read the article How to Fight A Rare Disease Or Two by Don Reed shared by the Cystinosis Research Foundation.
- “You can hope for a cure, but that’s completely unknown territory.” Watch the documentary based on the Tampa Bay Times article about a floppy dog, a miracle cure, a sick boy, and a reason to hope here.
- Read the 8 part article titled Lincoln’s Shot by reporter Lane DeGregory.
- Upcoming rare disease meetings for readers in Arkansas and California! Meet others, speak with legislators, and improve one’s rare advocacy skills. Check it out at the Rare Action Network! Make sure to click on State Profiles and click yours states name to register for events.
- Watch National Organization of Rare Diseases video sharing tips for advocacy leading up to Rare Disease Day 2019: 10 Tips for New Rare Disease Advocates From Current Ones.
- Karlo from Croatia lives with Neurofibromitosis Type 1: read his story here.