Rare Disease Behcet’s disease
I have been dealing with a rare autoimmune disease called Behcet’s disease since my diagnosis at age 2. With this I go through phases of feeling fine for weeks or years to episodes of being sick week after week. Since I am young I haven’t had to deal with a whole lot of people judging me for my day-long absences, and if there was an issue my mom would take care of it for me.
I am now 20 and a sophomore in college, therefore I no longer have my mother to stand up for me. For the past two months I have been dealing with Behcet’s episode after episode with no break in between, and since I haven’t been this sick since high school I have grown tired. I have been snapping at people and secluding myself. I have also been dealing a lot of family issues, which has not helped with my mental health or my interactions with people.
The other day I was crying because I was in pain and just wanted to be left alone. My roommate came in and was concerned and asked what was wrong. After telling her it was just my Behcet’s and wanting to be left alone she still wanted to talk, and unfortunately I snapped at her. I know she is trying to help me feel better and is trying to learn about what I need, so I went back and apologized later. However, this is only part of my story.
While recounting this to a friend whom I thought understood my access needs, she said a sentence that has stuck with me long afterwards. While telling her my story she became quiet and kind of stiff, and I knew she was about to disagree with me. All she said in a matter-of-fact tone was, “Well Tori, you’ve got to stop snapping at people.”
While this might not seem like a big deal, it stuck with me and for a while and I wasn’t able to figure out why at first. Later I understood why I felt so hurt. My friend focused more on my actions than trying to validate my feelings. I knew my actions were wrong, but that does not discount how I was feeling in that moment with my roommate, my pain and anger.
Similar interactions led me to remember an article I read in my Woman’s Study course about a term called access intimacy. Access intimacy is a concept named by Mia Mingus in a 2011 essay, Access Intimacy: the Missing Link. She describes access intimacy as, “an elusive, hard to describe feeling when someone else ‘gets’ your access needs. The kind of eerie comfort that your disabled self feels with someone on a purely access level.”
I have two friends I have pure access intimacy with, and many others with whom it is growing. I have never hesitated to share what I am going through with those two friends, and they are always learning and growing in their understanding of what I need. I know that when I have a problem they will be there with advice that doesn’t hurt, and there is no embarrassment. I am also not forced to talk about what is happening to me. Since I now have the ability to recognize what made these friends special, I am able to grow in my recognition of fake intimacy. I can now describe my relationships better to others.
Mingus’ words made me realize that some of my friendships with were based on a false sense of intimacy. Access intimacy is not pity or empathy, while it might feel like that if you can not recognize it. Someone who got my access needs would have validated my feelings before talking about how I should have acted. This is where my friend comes in. Every once in a while I would talk to her about my Behcet’s, which is still an adjustment, and most of the time I felt comfortable, but the other half of the time I was afraid of what she would say. With other friends it feels as though you have to describe everything you are going through for them to be able to believe you, or you feel the need to constantly apologize for being sick.
Access intimacy does not rely on people’s identities, meaning people do not need to be disabled to have access intimacy — but it does tend to help, because they often have similar experiences. On the flip side, just because you meet someone who is disabled does not mean you will have that connection.
Access intimacy was something I didn’t know I needed until I moved away from my friends. Now living an hour away from my friends I crave that feeling, and went looking for it while also putting my trust in places it didn’t belong. However this does not mean I have to have a connection with everyone I meet. Some relationships need adjustments or growth. For some relationships I have to be OK with distance and understand they just might not be able to meet what I need.
This does not mean access intimacy cannot grow between people. My roommate is a good example; she asks questions and listens to what I need. In the end I am a lot more comfortable and willing to talk to her. many people with disabilities don’t realize they lack access intimacy and how important a need it can be. I encourage people to look for access intimacy in their own lives.