"You do realize that your independence makes me look like a crap friend?" asked Claire, with a wry smile, as I returned from the pub toilets the other night. "People see you marching off on your crutches, opening doors for yourself, and they look at me like I’m a right heartless bitch." "The thing is, I know that if I insisted on accompanying you to the toilet, you’d probably..." "...hit you with one of my crutches," I concluded. A few hours later and Claire was following me up the stairs to my flat, patiently lifting and guiding my feet on to each step.
The toddler analogy
It struck me that being friends with me is rather like being friends with a toddler. Fiercely independent one minute and yet totally reliant on you the next. A few months ago, I came across an article on social media titled, 'What I need from you now I have a chronic illness' or words to that blunt effect.
I read the post, on the one hand admiring the fact that the author was brave enough to write such an article, but at the same time slightly appalled by the passive-aggressive tone of the piece; "I have a chronic illness, and this is a list of what you should and shouldn’t be doing in my presence."
It bore no relation to my own experience or ‘requirements’, despite the fact that I, too am living with a chronic illness. There is no right or wrong way to be friends with someone with a chronic illness – in my case, multiple sclerosis.
The unique experience of MS
Just as everyone’s experience of MS is different, so too are everyone’s needs, expectations and friendship groups. And, these ‘needs’ may change over time – sometimes within the space of a few hours. My having MS has been a learning curve – not just for me but for my friends and family too. I have had to learn (and am still learning) to be the ‘new me’.
I’ve had to learn to ask for help (not always for the same things every time). My friends have become more confident in suggesting when I might need their assistance, and I have become better at accepting their help.
I have come to realize that sometimes my stubbornness, and my determination to be independent, can sometimes make things harder for other people. I have had two trips out in a wheelchair now – once round the Eden Project, and once through some World War II tunnels.
I hate being in a wheelchair (not least because my friends are maniacal drivers), but by allowing myself to be wheeled around we are all able to enjoy the same experience at the same time, rather than bench-hopping slowly round said attraction. Friendship is a two-way street, and it’s about finding a balance.
My choice: openness
From the moment I was diagnosed with multiple sclerosis, I chose to be open about my condition. I had read so much online, and experienced so many negative views about MS that just didn’t relate to me, or how I felt about my MS.
I didn’t want some generic MS information dictating how people viewed me, or made assumptions about what I needed. Once my condition affected my mobility, it became impossible to ‘hide’ my MS in any case – unless I wanted to spend a lifetime lying about the alarming regularity with which I experienced skiing accidents.
The author of 'What I need From You…' clearly had no issues with regards to living openly with their condition but they forgot to take into consideration one key fact: your friends’ lives don’t come to a stand-still just because you have MS.
They are still dealing with their own unpredictable lives. In the eight years since I was diagnosed with MS, my friends have had to deal with their own illnesses, illnesses of family members, becoming parents, deaths of parents and partners… the list goes on. It would be unfair – and unrealistic - of me to expect them to be at my beck and call, particularly as I am no longer capable of returning the favor.
We are all muddling through together. I am grateful that my friends have taken my MS in their stride and allowed me to continue being me - or as close to the original me as I can. (I’m rubbish at assisting with a house move, but if you want a holiday organizing – I’m your girl.)
The reality of learning to live with MS is that it affects everyone – not just the person diagnosed. I hope that by being open about my condition I have made things easier for the people I am closest to. It’s certainly made things easier for me. I made the decision on day one to write my own story, so that no-one reads some passive-aggressive article online and thinks it refers to me. It doesn’t.