Blog Entry May 1st 2014 by J.M
Being diagnosed with Multiple Sclerosis and coping with the depression that accompanies diagnosis.
Being diagnosed with Multiple Sclerosis has simply been the worst time of my life. Not necessarily because of the diagnosis itself but the process of being diagnosed. It took several months of testing for my MS to be confirmed and by the time I was confirmed as having MS, I was oddly relieved. I cannot describe what waiting for a diagnosis is like. Put quite simply, the ‘middle ground’ feels like a suspended state. It is like being trapped in limbo. Every day felt like Ground Hog day. The uncertainty of any diagnosis is almost worse than the diagnosis itself. By that stage I knew that I had developed MS. My father was diagnosed with MS thirty three years ago and I had always felt in myself, even from childhood that my body was never quite right. I have grown up familiar with the symptoms of MS and I just wanted the doctor to confirm it so that I could begin to accept it and move on with my life. The process of being diagnosed is metaphorically like standing in the middle of a road and looking at a bus about to hit you in slow motion. You are powerless to move yet you just want the diagnosis, to be ‘run over’ by the bus.
Amidst all this, I was plagued with worries for my future. I had been depressed for months before this, constantly lying awake at night beating myself up over the fact that I had not got my foot on a career path yet. I already felt utterly lost and did not have the slightest clue as to where to start to improve my situation. I slept with my television on because the silence was deafening. I had to distract myself in order to go to sleep. Moreover, instead of spurring me into action, my worry was actually stopping me from doing anything. I seemed to think that the time was now and everyday that passed that I did nothing was a day I could not get back.
The suspended state, on top of how I already felt, made me feel as though I could not feel any lower. One worry was thrown on top of the other and I could not cope with the pressure. Further still, my parents took my diagnosis extremely badly and my family and I just seemed to drift apart in totally different directions. I was still living at home and even though we were living under the same roof, we were miles apart. The only real source of support I received was from my friends and my sister but I still dreaded going home to my parents. I knew I had to seek help when I typed in ‘ways to commit suicide’ into my phone. I just shuddered when I woke up every morning, I couldn’t bear waking up and seeing sunlight. In some sick way, I actually began to hope they would confirm I have developed MS because then it would provide me with an excuse to never get out of bed again. I completely lost my appetite and had a knot in my stomach knowing that the time was coming closer to confirmation. I was plagued with the image of myself sitting in the neurology clinic waiting for my name to be called.
Eventually, on the 18th March this year, my mum and sister and I sat together as my MS was confirmed. My mum and sister cried and yet I didn’t. I was deflated of course, but also relieved that I could finally move on from the suspended state. I now had certainty and could begin my treatment straight away.
A few weeks have passed and the initial shock is beginning to pass for all of us. The dust is beginning to settle and it finally feels as though the storm is beginning to pass. It is still early days as I am still in the early stages of treatment but it is as though my family and I have finally found our way back together again. I am still not feeling fully myself again but I do not dread waking up in the morning as much as I did. Our emotions as a family felt like they had been shook up, like in a snow globe, and the only thing to do was wait for them to settle again. The one thing I tried to remember throughout my diagnosis was simply this: All things will pass. Unfortunately in life, there are times when we can do nothing other than hang in there but, even in my darkest hour, I knew the light would come through again eventually. We still have our dark days, individually and as a family, but finally there is more of the light present than the darkness.
For anyone going through the process of being diagnosed, I know how you are feeling. There’s the not knowing, the anger, the feeling that your hands are tied, the jumping between the feelings of ‘everything will be OK’ and fear. The most trying part was having to carry on as normal and go to work whilst feeling locked inside my own head. For anyone in a similar position, I would offer a few suggestions. It is so important to engage in some social intercourse. Depression can often involve all-consuming, repetitive thought patterns and any socialising, even just a trip to the cinema, will instantly disrupt them. As hard as it is to wake up in the morning, you have to lift your body out of bed and get out into the daylight, even if your head is telling you there is nothing to get out of bed for. This may feel as though you are about to climb Mount Everest but lying in bed really will do nothing other than allow repetitive thoughts to dominate your thinking. I am certainly not advocating alcohol related socialising. Indeed, I am an extremely infrequent drinker anyway and throwing alcohol on the situation will only exacerbate emotions. You will only feel good momentarily but may do or say things which you will later regret. But no man is an island and we as humans are relational and social beings. I had countless trips to the cinema, sessions in the gym, walks with friends, cups of coffee in cafes etc. In a bizarre way, although this was no doubt the darkest time of my life, I seemed to live my life more than I had ever done.
The second suggestion is to please seek help the moment you find yourself contemplating suicide. I contacted my friend via text message simply typing the words ‘I just researched ways to commit suicide’. I think part of me did this just because I needed to see it written down. Again, seeing your experiences written down makes you see them in a completely different light. Monsters really do live in the dark and exposing them to the light of day somehow dismantles them. Suicidal thoughts really do feed off themselves and again, you have to reach out to someone you feel comfortable with to interrupt the repetitive thoughts.
The final suggestion I would offer anyone going through a diagnosis is to be kind to yourself. I have always dealt with depression having taken anti-depressants for several years. I managed to come off them when I was 26. Whilst this was a great achievement, my thoughts have still been plagued with my lack of career direction. For the past two years this has frustrated me hugely and the feelings of failure have crept in. It’s only now that the intensity of the situation has subsided a bit that I see how needlessly harsh I was on myself. I am not a failure; I just have not found the right career path yet. Instead of being consumed by my feelings of failure, I have decided to visit a career advisor. Instead of sympathising with myself, all I did was get angry. I never once gave myself any praise for even going through the process of being diagnosed. All of my bravery was forgotten in an instant because the self-loathing was easier to tell myself. There are so many experiences and scenarios in life which we do not give ourselves credit for. Maybe we need to write our experiences down in order to fully appreciate what we accomplish or simply get on with. It may sound odd, but any time I feel myself slipping back into self loathing, I look at a photograph of myself from my childhood and I say to myself to be kind to her. It really gives me some perspective.
I will conclude my blog post here by saying that I am someone who is on a journey. The depression which accompanies any diagnosis is hugely overwhelming and writing this post has allowed me to process some of that. I am three weeks into treatment and it is now becoming part of the norm. It’s amazing the mind’s ability to create a new norm and framework. I have also been fortunate enough to have attended a fantastic counsellor. She has taught me the importance of getting out of bed in the morning and feeling the ground beneath my feet. She has become a human sounding board for me, our sessions almost like verbal journaling. Verbalising my emotions and fears disempowered my repetitive thoughts. Counsellors will not claim to solve all of your problems but they will reflect your thinking and allow you to gain some perspective.
For anyone reading this that has either been diagnosed or is in the process of being diagnosed please remember that whilst you may have an illness, it does NOT have you.