Guest post by: interACT Board Member, Lynnell Stephanie Long

Lynnell-S-Long-clarinetWhen I was a child, and in the University of Chicago Hospital, I contemplated death more than life. At the age of 14 I was told I was infertile. The doctor told me matter of fact, and never offered any sort of emotional support. I was told this at a time in my life when I felt I needed unconditional love more than ever. It was the coldest office visit I ever had. I didn’t know what to do with that information, who was I to tell? I was asexual at that time, so the only person I could tell was my mom. I can’t remember her response. All I remember is going home and attempting suicide. I remember feeling this emptiness within me that some part of me felt having a child, unconditional love, could fill. Once that was taken from me I had no reason to live.

I was being treated for Tuberculosis at time, something I had contracted from another patient at the hospital. I went home and took all the medication they gave me. When I woke up that evening I cried. When I was asked what was wrong, I lied and said nothing! Who does a 14 year old Intersex child tell about the pain they suffer in silence?

When I returned to school that Monday I was different, I had lost my flair for life. School was only a means to an end. That summer I tried marijuana for the first time. I didn’t like it at first. It made me feel stupid, it controlled my thinking and caused hallucinations. But it was very successful at masking my pain. At the age of 17 I was smoking pot almost everyday. I was still doing good in school, so no one noticed.

Even though I still had regular visits at the hospital I started to skip my appointments more and more. Nothing the doctors said would help. I resented them. In 1981, when I was 18, I agreed to be hospitalized once more that summer. This after being hospitalized for studies every summer from the age of 10 – 18. The doctors told me there was new drug that could possibly reverse me being infertile. This was a trial drug that had no positive affects on anyone, but they thought it would be great to try it on me. Of course it didn’t work. I was more frustrated than ever. I grew angry at the medical establishment, and didn’t trust any doctors.

I never returned to the University of Chicago Hospital again, until 2014 as a paramedic taking a patient to the emergency room.

I abused drugs for many years, escalating from pot to harder drugs. In February 1993 I signed myself into the rehab, and I’ve been sober every since. I made a promise to myself that I would never use drugs or alcohol again. I knew I had to find a way to deal with my pain. I knew I had to talk to someone. Luckily I found a very good therapist, and I attended A.A. meetings regularly. For years I tried to be what the doctors wanted me to be, and what my mother wanted me to be. It was time I decided what I wanted for myself.

On February 17, 2016 I celebrated my 23 year sober anniversary. Today my life is filled with spirituality, and my Intersex community. I am on the Board of Directors of AIS-DSD Support Group (, and interACT Advocates for Intersex Youth ( I work hard for both organizations to prevent what happened to me to happening to Intersex youths.

Lynell Stephanie Long is an intersex activist and blogger. Check out more of her work on her blog On Being Intersex.