People found out gradually and while most were supportive, others were not. Some people said ‘how are you going to look after your children?’, ‘when will you stop walking and get a wheelchair?’, ‘My dad has a friend that has MS and she was fine at the start, like you, but she’s blind now.’ A colleague arrived into work one morning and said ‘I was watching a show last night and it made me think of you, it was life from the perspective of a wheelchair user.’ She went on to say ‘when are you going to stop working? It’s not fair for you to continue to place a burden like this on management.’ I said nothing, I was choking back tears and trying to come to terms with the enormity of my diagnosis, I literally didn’t have the energy.
But time passed and my initial flare dissipated, and I was mostly ‘okay’. I had less energy, sometimes my left leg didn’t quite work and sometimes the fatigue made everything seem insurmountable but, for want of a better turn of phrase ‘I got on with it’ because I felt I had to.
I went to work, I studied, I looked after my children and I pushed myself to do all the same things as everyone else my age, even when I knew my body was telling me I needed to stop. When the pain was really bad or when I felt extremely tired, I sometimes just made myself push through it, rather than resting like I should have.
There were several reasons why I did this. I seemed well, because I looked well and healthy and I could walk around and work. I could look after my children, I could study. People began to say things like, ‘are you sure they got your diagnosis right?’, ‘at least it wasn’t cancer and sure you seem to be fine now.’, ‘Your kids need you to keep going, imagine what would happen to them if you gave in to this diagnosis.’, ‘you’re one of the lucky ones, it doesn’t seem to affect you at all.’
Because people incorrectly perceived me in this way, I felt that I needed to ‘be’ a particular way. I felt that I needed to just keep going even though my body was screaming at me to stop. I felt that I would let people down if I didn’t show up or if I dared to rest. When people looked at me, they didn’t see someone living with a chronic illness, struggling to survive from week to week. I kept turning up when I should have been resting, when I should have felt able to say ‘no, I’m too tired and weak today’.
Gradually I realised that things had to change. I had to start using my energy for the things that matter to me. I started to count my spoons and use them accordingly. I paid attention to my body and rested when I needed to. I made myself stop and think before saying ‘yes’ to every request. My good friends understand that my energy levels aren’t great sometimes and they come to visit me and never put me under pressure.
I needed to stop bending to the weight of societal pressure to do things just because I seemed well to other people. I’ve had to accept that MS has changed my life and that it’s ok if sometimes I just need to stop.
For more about life with MS visit : www.ms-society.ie/about-ms/living-ms