When I was diagnosed in 2009 I was in college so I didn’t really take it seriously, it was later that I realised how much Multiple Sclerosis would affect me in life. 2018 was the time I noticed things were going really wrong, my husband and I were 2 years married and celebrating our anniversary when we went to dinner and I kept tripping, he thought I was wearing the wrong shoes and got quite annoyed with me but I knew that it was not my shoes it was definitely something else. We take transport everywhere and We both jogged every weekend and used to cycle. Needless to say, I couldn’t jog anymore, 1 year earlier, every time we went out for a jog, my body would seize up with spasticity and I would be in pain all over, paralysed and unable to move. On our anniversary we walked to the train station with many problems! I wore clogs with my outfit and my feet kept slipping to the side, making me off balance.
Months of tripping, my shoes falling off and dragging my feet went by before the real problems came to light and I couldn’t walk properly. I fell into people and I walked into walls, wanting to go straight but veering to the right or left was the start.
Every year prior to this point I would go to the Notting Hill carnival with my friends, I’m from West London so the carnival was a custom. However, August came and I begrudgingly had to sit this one out. The Carnival involved being on my feet the whole day and a lot of walking to see different floats and sound systems, with the added fatigue there was no way I could survive the whole day. I didn’t realise that was the first event I would not be able to attend and that I would lose relationships because of multiple sclerosis. Naïvely I thought that was the one carnival I would miss, like many other relapses they go away into remission but this one was very different, it didn’t. My friends didn’t check up on me, they didn’t call to see why I didn’t come out, they didn’t come round to see where I had been. I missed more events, birthdays and holidays.
My family didn’t realise the trauma I was going through, I made a really good effort to hide the pain and I was never asked how I was or if I needed anything. It was like Multiple Sclerosis didn’t really exist. That diagnosis from 2009 was seen to be so mild it’s like nobody realised that the disability would accelerate and that I would deteriorate, MS from 2009 was not the same MS in 2017.
The other relapses in between were over so quickly, I never needed to complain, the only person that I had by my side was my husband. He saw me day after day, my struggle, the pain and my inability. He was my support, to everyone else I was out of sight, out of mind.
That really bothered me. I didn’t realise I had such a lacklustre support system until a major relapse had slowed down. I was coping a bit better & found the voice and energy to speak to a friend, who I classed as a sister. This friend wasn’t around when I needed her, she never rang me or checked up on me. I later found out, when people asked where I was, she told them I was fine and I was just taking a break at home.
At this point I was angry and really hurt, I cried because of the pain that I felt internally and externally I couldn’t believe that the relationships that I had made through life really amounted to nothing! my worth as a person was nothing if I wasn’t actually around. I felt invisible and I didn’t feel important enough for anyone to check up on. I was so scared because I didn’t know what was happening to my body and it was hurtful to experience it alone. I didn’t have many friends so the friends I did have were really important to me. I’m a proud woman so it takes a lot for me to admit my hurt but that day I knew I wouldn’t waste time feeling sad about friendships that weren’t two-sided.
My family only hear the trouble I have through the phone, I live so far away, visits are few and far between. When they do happen, I don’t want to bother anyone with my problems. I don’t want to scare anyone off because the reality I have learned to live with isn’t fun, It’s dark! I can’t turn it off or negotiate with it. I see every relationship as optional now, if people can’t value and support me, I’d rather not waste my emotions. Time and emotions are something we can’t get back, so I choose to stay peaceful and prioritise myself.
My relationships haven’t changed from 2017 to now, just fewer friends and less family. But a whole lot more community from fellow MSers.
People rarely message me to see how I am and how I’m dealing with isolation, if I get a call or message it is quickly followed by something the other person wanted to say, the real reason for the interaction. MS is lonely and it’s important to have people who understand what you’ve been through. The doctors don’t get it, the GP doesn’t understand, friends are busy and family can’t relate.
I want the friendships that you read about, the type of people that will call or text you just to say hi. People that know you inside and out, that support you through your trauma and stupid decisions, but also that’ll give you tough love. Those who would be a shoulder to cry on and laugh till your belly hurts, I want happy tears!
My name is Shereena Aitken-Grey, I’m 30 years old and I was diagnosed with Multiple Sclerosis in 2009. I really came under fire from Multiple Sclerosis in 2017 when relapses began to get much more frequent and the disabling factor surfaced due to mobility problems. I was born and raised in London. But I now live in Kent with my husband. I have two sisters, one I grew up with, and one I did not.