Living the Long Term and Disabilities

Lucy Beall-Lott discusses the implications of long-term relationships and disabilities, talking with three other women who share her skin condition. She discusses their anxieties as well as her own, and highlights the ongoing issue of the stigmas of dating with disabilities, including the stigmas as portrayed by the media.

I was terrified by the thought of my boyfriend realising the extent of my skin condition. My wonderful boyfriend and I have now been dating for a year and a half, and he’s been exposed to the worst my condition could throw at me, taking it with grace. At the beginning of our relationship however, I became quite scared- what would happen when Douglas discovered my condition wasn’t just scarring, and was in fact quite a brutal thing that often tested the limits of my pain? What would happen when he saw me get injured, saw the skin shear from my body? Could someone like me even be loved, in the long term, or would it be too exhausting?

I admitted to myself I wouldn’t know what I would do, had it been the other way around. When the moment finally happened- I clumsily fell and skinned my knee after a night out, alcohol may have had something to do with it- he told me to stop apologising so he could help me, because he cared and wasn’t going anywhere. That night happened about a year ago, I’ve survived many injuries and he is indeed still here with me. When I asked him for help with this piece I actually had to remind him that I had a serious skin condition and our relationship may work differently because of it. He does not agree. 

My condition is extremely visible. I have bright red scars that take up the majority of m knees, ankles, elbows and hands. There are more every day. My mother once told me that my appearance will not matter to the right people, and the person I end up dating will be a very good person. It’s true, dating with a visible disability does mean there is a bit of a built-in litmus test involved. The dating world is daunting enough on its own, and although I am incredibly happy now, there have been many horrible experiences that I would have not had if I were able-bodied. I asked other women with my skin condition how they approached dating to see if we shared similar mindsets and anxieties due to our diagnoses. 

Michelle Kay emphasises the need for confidence. While this is a good thing for everyone to have, regardless of physical ability, Michelle says it is what helped her the most when she began to date as a young adult: “I was always hesitant to date but once I was out of high school and gained my confidence I found dating wasn’t as hard  as people led on. Yes I had an affliction that needed to be addressed sooner or later but I felt my personality and beauty was more then anything that can be defined by this skin condition.” When I asked Michelle if she felt that it was harder to maintain long-term relationships due to our condition she said yes, and expressed the need for communication as we are often vulnerable, whether we like it or not. “You can’t hide the bad times from them.” 

Miranda also shared these anxieties of long-term relationships and if her boyfriends would be able to handle the pain she went through, but that she did not approach dating differently due to our skin condition. Her husband had been aware of her condition as they were friends for several years and therefore doesn’t react negatively to her injuries, but Miranda expressed how upset he becomes if he is the cause of these injuries, as there is nothing either of them can do to prevent it at times. “But I can say that the longer we are together,” Miranda began,  “the more he learns what causes injuries so that he can avoid them as much as he can.” This is something Michelle and I would agree with. 

Ariana told me that due to our skin condition she feels she has isolated herself, worried (like Michelle, Miranda and I) of being accepted and seen beyond our condition, but has not dated any differently. Ariana is, intact, angry that dating with disabilities is seen as something trendy. “When a typical individual starts dating it’s not on the news”. 

If dating with disabilities is normalised, there would be less of a stigma around it- differently abled individuals would not be worried about acceptance, or fearful that their partner would leave them once they discover the severity of their condition. 

Again, I must stress the importance of awareness in this area. Ariana is correct- differently-abled individuals with relationships should not be treated as anomalies. I was recently featured in the daily mail and the fact that I was dating and able to have sex was a highlight of the article. This sensationalisation, while helpful with spreading general awareness for my skin condition, does not promote the normalisation of such relationships but is beginning to step in the correct direction by recognising that those with disabilities are still sexual people. Like most things concerning disabilities in the media, it is a work in progress.

Love is not restricted to a certain body type or ability- that is the message women like Michelle, Miranda, Ariana and I would like acknowledge, not love in the context of our skin condition.