I did a post about how I was diagnosed but it mainly covered how it physically affected me. I wanted to cover how receiving those diagnosis’ emotionally affected me and how I came to accept this new aspect of my life. I try my best to keep this blog candid, which means sometimes I have to push past the nervousness of revealing things I would generally keep to myself. When it comes to my illnesses, I don’t show any emotions such as anger, crying etc to anybody. It’s just something I prefer to keep to myself.
I was prepared by my family, friends and my GP to receive a Lupus diagnosis. I went to my first Rheumatology appointment with no expectations of a diagnosis, I wasn’t naive and knew a diagnosis could take months to years. I didn’t have to wait, I was diagnosed in that first appointment. I wasn’t shocked and I wasn’t upset. When the doctor said I also have Antiphospholipid Syndrome and Sjogrens Syndrome, I was shocked. At no point was I told to prepare for that. My doctor was telling me all sorts “you need to get to a pharmacy as soon as you can, you need to call your Lupus nurse, if you fall pregnant you need to contact your OB immediately, do you understand?” I didn’t understand but I said I did. I stopped paying attention to him after he told me I had Antiphospholipid Syndrome, I’m not bothered about Sjogrens, it doesn’t massively affect me. I left his office with a piece of paper that I had to give the nurse and she took 5 tubes of blood. I remember looking at my dad and joking whilst having my blood taken “I have more illnesses than you now, I win”. I entered the hospital as Emily with a straight forward life with no complications and I left as Emily who was officially medically complex.
I couldn’t get to a pharmacy, I left the hospital after 5pm and they were all closed. I was visiting family and friends on the weekend with my mum so my dad dropped us off at the train station. I read the leaflet my doctor gave me over and over. My mum asking me numerous times if I was okay. I always replied yes. She was on her phone, I think texting family about the appointment, she kept looking over at me though. I was quiet, trying to get my brain around how I now have 5 illnesses. The leaflet covered everything from kidney problems, lung problems, strokes, heart issues to how to look after yourself. I remember thinking “Oh I should probably stop smoking” and I did, I might have had the odd packet of cigarettes whilst in the process of stopping but I eventually did.
When we arrived at my Aunts house, they were talking about it and again I was asked if I was okay and I said “yes, I’m relieved”. I wasn’t lying, I was okay and I was relieved, I was just shocked and still confused. The next day we went to a pharmacy and mum pointed at a medication box, she said it’s ideal to have one. I didn’t want one, I didn’t want to be stood in a pharmacy putting my first of many prescriptions through. I picked one up though, I got my medication and sorted them out in my medication box, she was right they are ideal.
I wouldn’t say it affected me until a couple of months later, I didn’t realise but my family did. I was quiet, spending more time alone and I wasn’t my ‘happy’ self. I remember the first time I cried about it, it was probably 2 months after my diagnosis. I was in the bath and I just sobbed because I didn’t want this life, I questioned why me? I thought I must be a terrible person to derserve this. I wanted so desperately to see the old me, what would she be doing now? She would probably be out to dinner with friends in fits of laughter without a care in the world. That was probably the moment it hit me.
We arrived at my second Rheumatology appointment but we were early so mum and I sat in the hospital cafe. She said she wanted to tell me something but asked me to not be offended and that it was recommended by the therapist at her work. She had ordered a ‘self help’ kind of CD. I told her I was fine and I didn’t need help. Which looking back was rude, she was trying to help me, she could obviously see me slipping into some sort of depressed state.
Throughout all of this I was in limbo with my job, my employer kept sending me to an occupational health therapist. I knew I was about to lose my job, I just didn’t know when. That’s one thing that has affected me the most, not being able to do the job I truly love. It’s not to say that in the future I won’t be able to go back to it, but for now I can’t, it’s too physically demanding. I miss it, but how can you responsibly look after someone else when you’re unwell yourself? The whole process was really drawn out but earlier this year I was officially resigned on medical grounds.
It took me a while to pull myself together from it all, I realised this can’t be changed, this is life now and I had to accept it and it was time to move on. I stumbled across a quote which I love:
“As you waste your breath complaining about life someone out there is breathing their last. Appreciate what you have. Be thankful and stop complaining.”
It put a lot of things into perspective for me and it made me think, if this experience has taught me anything it’s that we don’t appreciate the things or people we have. Dealing with Lupus and the other illnesses is hard physically and emotionally but there are people out there fighting a harder battle. I think it’s very easy to feel sorry for yourself and listen to what your mind tells you, but I now know I’m not a terrible person and I didn’t deserve this.
So the best way to cope? Stay humble with what you have. Make sure to smile often and always keep your humour.