I don’t tend to talk about my illness with close family members. Very occasionally, my Mum will ask how a particular appointment has gone, or console me if I can’t contain my emotions at a particular point in time. Regular readers will know that I am in the middle of querying my diagnosis with my care team, and that my Mum is partly responsible for this (see Should We Come With A Label?). But in the last year or so we’ve never really gotten beyond this level of communication, and it seems to be working out ok. Until yesterday, when my Sister decided to try and gain a better understanding of things*.
I’m always a bit wary of talking to my Sister regarding my illness as she doesn’t tend to accept it and everything that goes with it. She is from the school of ‘give yourself a shake’ and doesn’t believe in lying down to things. There have been many occasions where she has become impatient and frustrated with me, occasions that have never ended well. It started out fairly innocently, with her asking how I was getting on with my therapist (her and my Mum talk, so I knew she’d be aware that I was struggling with my diagnosis/identity and seeking further investigation into how I got here).
Then she started asking about work. I haven’t been able to work for the best part of three and a half years, and I think she (wrongly) assumes that one day I was sitting quite comfortably at work, meeting deadlines and attending meetings and the next I had Depression. She doesn’t seem to grasp that it was a gradual process, that I struggled more and more until, eventually, I was ground down by the effort and unable to function. She asks endless questions: Am I ever going to be able to go back to work? How do I know I will never work in that kind of environment again? Who has told me these things? The answer to that last question would be my Consultant, just as her Consultant has told her she will have Crohn’s Disease for the rest of her life!
We discussed previous holidays and short breaks away, where I seemed reasonably happy. Were we ever going to be in the position to do these things again? Or might we even go out for coffee again?
She told me that, as she is of a nervous nature, she could quite easily say she has GAD. I had absolutely no response with which to correct this, so I let it go over me head. Who am I kidding? It’s still in there, eating me alive.
In an attempt to turn the conversation around, I told her about the art therapy class I’m hoping to attend in the near future. It’s facilitated by the CMHT and arrangements are being made for my CPN to accompany me to my first class, to help alleviate some social anxiety and introduce me to the tutor and OT. To my Sister, this translated to me being chaperoned by a carer, as someone with a learning disability might be. And so ensued a conversation in which I did what I could to explain the difference between the Community Mental Health Team and Learning Disability Service. That these are two separate services, one catering for people with mental health issues such as Anxiety, Depression, Bipolar Disorder, BPD…and the other for people who are learning disabled, or mentally impaired. She doesn’t seem to comprehend that the patients of each service are not forced to interact, that I might actually meet someone on my wavelength, my own age, with similar problems, that an art therapy class might be good for me.
Frankly, by the time she left, I was exhausted. I felt like a defendant on the stand, being cross-examined by the prosecution, having to justify my illness and the things it has taken from me. My Mum tells me she just doesn’t fully understand how this has happened to me – join the fucking club. She can’t grasp that my illness has changed me forever, some things will never be the same again and that we have to learn to work around it. Most heartbreakingly, she misses her big Sister, just as my Brother does, and my Mum and Dad miss their Daughter.
And I miss all of you. I know you think I’m just a shadow of my former self, this apathetic shell of someone you used to know, dead inside…but I’m not. I love you all so much it hurts, I just can’t get to you. xxx