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My Hidden Disability - Marsha McAdam

I have Borderline Personality disorder(BPD) otherwise known as Emotional Unstable Personality Disorder(EUPD), and the best way for me personally to describe it is having feelings of persistent distress.

At times going from joy, despair and abandonment and loneliness all within a few minutes.

I am really struggling to articulate how I feel and it is a struggle trying to understand why I am feeling as I am! And that may be part of the problem.

Wikipedia says that the symptoms of BPD include unstable relationships or an unstable sense of self. The instability list includes unstable emotions, and impulsivity which is by its nature an indication that things are not stable. And yes, it also lists recurrent suicidal ideation or self harm. Those I guess must be tied to the other things listed: fear of abandonment, chronic feelings of emptiness; inappropriate anger and dissociation. If you feel all these things would you blame anyone for having suicidal thoughts.

With all that is going on in the world at the minute particularly during this second lockdown I have been retreating into myself. I think that people with EUPD or BPD find the isolation of the pandemic particularly hard. With the isolation there is not that much to hold onto. It is easy to lose contact and connection and then feeling of dissociation becomes a coping mechanism to get through each day. But when on Zoom or MSTeams meetings there is a feeling of relief just to see people. I feel thankful that I am able to contribute in some way to the work of explaining to people what BPD feels like and other projects that are happening and feel real. But the people on Zoom can’t see how I am feeling. My disability is hidden. And if I told them…would they continue to call. Better keep it hidden.

Of course, I could not always keep it hidden. In my 20’s and 30’s I experienced most of the BPD symptoms listed above almost on a daily basis – so I know it can feel a lot worse even when there is no lockdown. I could get very angry. And talk of unstable relationships, I had none – I could not even relate properly to my son. Which made me sad and feel bad. I had all the symptoms no sense of self, impulsivity the lot.. I was lucky and had therapy that I feel saved my life. It was certainly life changing – a talking therapy called Mentalization Based Treatment (MBT).

It gave me some of the tools to understand why I was feeling the way I was. I could gradually allow myself to feel angry and learn that this was OK. but instead of acting out I came to be able to talk about it like I am doing now (well I am writing about it not talking but you see what I mean). I could express thoughts and feelings about lots of parts of my life, my past and my present without it making me feel discombobulated.

But since the beginning of Covid I have had to really work hard on my feelings of abandonment. Isolation makes medical sense but it is an enormous challenge for someone with my hidden disability. If you are prone to feeling that you have no sense of identity, and are threatened by crippling feelings of emptiness than being out of contact with others can feel like an overwhelming pressure. I feel lucky in being able to use the tools learned from MBT to get me through the days. But the feeling of loneliness, the hidden disability that

makes you prone to feel alone and isolated can come back as soon as the conversation on Zoom is over. While I take the time to join in on Zoom conversations as soon as the call is finished I am tempted to retreat into myself again. It leaves me with watching naff reality tv and being antisocial. I am realising that the disability that is to do with maintaining connections with people reduced the number of conversations that I have been having with close friends. I guess it is because of that old fear of abandonment.

Oh I almost forgot to say. I have a less hidden disability as well. I have physical health problems like Fibromyalgia (debilitating chronic widespread pain condition, chronic fatigue, type 2 diabetes, non alcoholic fatty liver disease, and asthma). But the hidden disability of BPD is much more painful than my fibromyalgia on a bad day. I feel sympathy and empathy when I share the not so hidden disabilities with others. But there is so much stigma and discrimination that comes with the label of EUPD/BPD that it remains hidden. I keep it hidden because there is less empathy and compassion than for type 2 diabetes.

Not all disabilities are visible. I hope talking about mine will make you think with more compassion about people you know who have this problem and support them and help them in ways that you can. Kindness is cure.

The theme for International Day of People with Disabilities 2020 is ‘Not all Disabilities are Visible’

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