Previously, I interviewed Sylvia Longmire of Spin the Globe about travelling the world with Multiple Sclerosis. Raising awareness of MS and accessibility is something that matters to me personally as my grandma had MS. I remember my grandad having to always have a ramp he had made himself in his car because most places didn’t have ramps for her to use so that she could access them. I remember how my grandma was rarely directly addressed, with waitresses asking my grandad what she wanted to order even though she was sat right there. My grandma struggled going out, or wanting to out, into a world that made her feel invisible and like she was a nuisance when she tried to navigate it.
That’s why supporting people like Rach on Instagram means so much to me.
Rach has had a full life, growing up in the countryside and working a variety of jobs from taxi driver to project manager. In August 2018, Rach was diagnosed with Primary Progressive Multiple Sclerosis. She turned to writing as an outlet and her blog, Accessible Rach, was born.
On her blog, Rach writes insightful articles that highlight accessibility at events, mainly Rugby League events at present. She travels to different grounds to complete accessibility assessments, noting their good features and what can be improved. She also is a prominent figure on Instagram, sharing beauty hauls and beautiful selfies showcasing different makeup looks. She makes sure that she isn’t seen as just someone in a wheelchair, but as the bold, brilliant person she is.
It’s so important to see the person, not the wheelchair, the disability or the difference. The person is what matters. Rach reminds the world of that all day, every day.
In your own words, can you describe your MS diagnosis journey?
My MS journey started long before my offical diagnosis in 2018, though at the time I didn’t know it. In July 2013, I had what was believed to be a Transient Ischemic Attack, also known as a mini stroke. It’s only since I received my hospital notes recently that it became apparent the consultant at that time suspected MS.
The real journey started when I started to really struggle with work. I wasn’t concentrating or performing to the levels expected of me. I loved my job and the people I worked with. I thrived on the intensity and spontaneity of never knowing from one minute to the next what I would be doing, but it became tough.
It had been a standing joke with my colleagues for just over a year that if we had an early meeting I would cut it fine, but what they didn’t know was before I set off I had been up for two hours to enable all my senses to start working prior to the drive to work. This started to get worse to the point that I was falling asleep in meetings.
In October 2017 while I was on the way to work, I was stopped in traffic when I fell asleep behind the wheel. Thankfully I drove a car that’s engine turned off when I stopped, otherwise I dread to think what could have happened. I managed to pull off the carriageway and rang a colleague, who in turn rang my boss.
When I arrived at work, I was called in by my boss and the HR manager and subjected to what can only be called a gruelling hour of discussions around my capability. Eventually I was given three options – stay in the role I was doing and be monitored on my performance, downgrade for a short time to see how I got on or go to see my GP.
I opted for the GP. She did lots of checks, arranged bloods and referred me to see a neurologist, which was bounced back.
Over the next few months, my symptoms like constant fatigue, permanent headaches, brain fog and aching limbs got worse, but my GP kept putting it down as fatigue. Eventually I was referred to the Chronic Fatigue Clinic. After attending in March 2018, I was informed that I had Chronic Fatigue Syndrome, but the specialist there wanted me to also see a neurologist to rule anything else out.
I paid privately to see the neurologist and he informed me I had positional vertigo and ordered an MRI Scan. I still didn’t know that MS was suspected, but when I went for the MRI Scan I knew there was an issue because the consultant radiologist kept sending me back into the machine. Following my scan, I got a very quick follow on appointment and underwent a series of reaction tests.
It was then that I was diagnosed with MS.
As strange as it might sound, I actually breathed a sigh of relief. At long last this bloody awful illness had a name! I no longer felt guilty for not being at work or for letting friends down. I now had a way forward.
Your diagnosis took such a long time and the effects of MS have undoubtedly had a big impact on your life. What has been the biggest or hardest change to your life since your diagnosis?
Two months after my diagnosis, I opted to take voluntary redundancy from my job. This was the toughest decision I have ever had to make. I had spent so many years working my way up and had finally got the recognition I deserved, then this illness came along and took it away from me. I was devastated.
Of all things I have had to give up, my job hurts the most.
A lot of people have heard of MS, but that is where their level of understanding seems to end. Is there anything you wish was more widely known about MS?
That no two people with MS are the same. The symptoms vary so much from person to person, what affects me may well not affect someone else and what affects someone else may not affect me.
I also wish people understood that fatigue can’t just be slept off. You’re not just tired – it’s your limbs not functioning properly, it’s having balance issues, it’s making you sick or have the runs. It causing your limbs to spasm, it’s giving you a headache, it’s making you dizzy, it’s making you sensitive to sound, taste and touch. Every symptom is increased when you are fatigued.
When I was first diagnosed, I struggled with what were well meaning friends and acquaintances offering unsolicited advice. In the early days, I was bombarded with messages from people telling me what I needed to do. I was told I just needed to exercise more, I needed to get out and mix with people, that other people felt tired too, that the more I used a stick the less mobile I would become. People would tell me to change my diet, go vegan, become gluten free, take vitamins, drink this, take that. It was draining, so that’s why I share memes and information from the MS Society and MS Trust to help people understand a little better.
What message do you want to put out there through your blog?
The message I am trying to get across is that not all disabilities are they same – in fact there is a very broad spectrum of disabled people. While everywhere can’t cater for all, they all have a responsibility to abide by the Equalities Act of 2010. I am surprised to see a number of places don’t.
I want to highlight awareness around accessibility for disabled people. I am classed as an ambulant wheelchair user as I don’t need one full time, but I have come across so many difficulties just trying to do every day things that as an able person I took for granted.
I want the blog to be the go-to place for disabled rugby fans to see what accessibility is at a ground they are planning on attending. As a Rugby League supporter, there have been a number of games I haven’t attended because of lack of access for disabled. I approached the Super League RL at the beginning of the season with the suggestion of working with them as there is little or no information anywhere about what facilities are available at Super League grounds. This is an ongoing project and, though nothing is set in stone, at least they are following my blog posts.
Your Instagram encourages people to look beyond disabilities and conditions to the person underneath. Why is this an important message for you to send?
Because I am still the same person. I still want to do the things I did, though I appreciate I can’t always do them as often as I would like. The aim of everything I do is to highlight the lack of accessibility at places and events. Until I became a wheelchair user I didn’t really realise how hard it can be for people in wheelchairs to get about. I have to keep making it known there is a person in that wheelchair that should have the same rights because sometimes people don’t look at the person, just at the wheelchair space. There have been occasions where I have spoken to someone and they have answered the person pushing me. I am quite dry humoured so I get away with saying, ‘hey I am down here’, which suitably embarrasses people so they either walk off or talk to me instead.
When I was younger, a good friend of mine ended up wheelchair bound after a bad car accident. It amazed how many people didn’t see her when we were out. They only talked to me. I watched her push people away because they stopped seeing her – they just saw her as the girl in the wheelchair. She eventually started to walk again a few years later after lots of support and physiotherapy, but I never forgot how people treated her.
I am determined that people won’t stop seeing me as a person.
You are incredibly passionate about beauty and body confidence. Why do you choose to celebrate yourself and others in this way?
I haven’t always been this way. In fact, it’s only in the last year that this has come about. Whilst scrolling through Instagram, I kept finding plus size bloggers and models such as Laura Ferry. Once I started following Laura, suggestions started coming up for other bloggers to follow like Danielle Vanier, Jess on a Plus Size and The Em Edit. These women were accessible human beings who were happy to respond to your questions and queries. What stood out the most at the start was how confident they all were in their own skin.
Now I look in the mirror and I take the outfit shots, I post the face of the day, I feel good in my clothes, I have thrown the scales away and I am no longer ruled by labels. I am happy to celebrate me, as we only get one shot at this. I am a little sad it took me to get to my 50’s to realise this, but I’m happy I’ve got here.
What difference has finding an online community of people who talk about things like mental health, chronic illnesses and body positivity made to you?
Finding an online community in the early days of diagnosis made all the difference. You do have to sift through the groups and people who think they have a magic cure for your illness, but in the early days I was lucky to find a local group and a couple of friends who I could turn to for support.
When I was first diagnosed with MS, a prescription for steroids arrived from the GP which I didn’t even know I was getting, and I panicked. I did a bit of searching online and came across the MS Society and while scrolling on their website a chat box came up. I got to chat to a lovely person and ask lots of questions. Her help was invaluable as I was still in the denial process.
People really need to tap into the MS Society’s resources as I don’t think enough people know they are there. Through them, I have spoken to a solicitor about benefits and started to apply for a grant for a wheelchair. What people don’t realise is they can just ring the MS Society support line and chat to someone about anything. I have called them when I just needed a listening ear and didn’t want it to be someone who knew me.
You are so glamorous – I love your posts about makeup and the different looks that you share. What things do you do that make you feel good about yourself and how you look?
I am flattered that you describe me as glamorous as that isn’t something I have been described as before! I love make up and always have done – you wouldn’t have believed that if you saw me at work, but on nights out I always made an effort.
I have watched YouTube videos for years and follow many makeup artists. I have done my eyes the same for years. With me having hooded eyes, I took the advice from a makeup artist on how to open them up with light and dark shades. For me, it’s all about quality of the makeup as you get what you pay for. Drugstore brands like Revolution are just not made for mature eyes so I stick to the brands I know I can use like Urban Decay, Tarte, Clinique and IT Cosmetics. Doing my makeup makes me feel good about myself, but what people might not realise is how long it can take me to do. A chronic illness can make tasks like applying makeup take so much longer, but I love doing it!
Skincare is just as important to me and I have used Clinique for years. I have tried other brands, but I always go back to Clinique. No matter how tired I am, I always take my make up off before bed.
If you could design your perfect advert for a beauty campaign that represented diversity, what would it be like?
I would like to see a disabled fashion brand. Until I became a wheelchair user, I never really realised how uncomfortable my clothes could be. I attended a rugby match with my scooter and because I had booked a wheelchair space, I had to stay on it for the whole game sat in one position. I spent the whole day pulling my shirt down at the back as it was riding up.
Fabrics needs to be different. Polyester, which the majority of fast fashion is made of, rides up when you are sat for any length of time. Fabrics need to be breathable, pockets need moving further down your leg – there is nothing more frustrating then trying to squeeze your hand into a pocket on your jeans when you are sat down. All coats need to have multi zips so you can open from the bottom and sit more comfortably.
What advice would you give to someone who has been diagnosed with a condition like MS?
Take your time to digest what you have been told. You will go through every emotion you can imagine, but try not to Google as this will only scare you. Get a notebook and every time you think of something you want to ask, write it down. This is invaluable, especially at your first MS Nurse appointment as you can go in feeling well prepared.
Decide who you are going to share the news with. I am an open person so my friends and family knew from the off, but that doesn’t have to be your way. It’s your choice. Sadly, you will very quickly find out who is in your corner and who you are possibly going to have to leave behind. Not everyone can handle your diagnosis, so shut down, politely, anyone in your circle that suggests you need to do this or you need to do that.
As my GP said to me, you have just been diagnosed with a long-term condition of which there is currently no cure for. My GP ‘s advice was to talk to someone, so I paid for 6 sessions with a private counsellor. She was what I needed and really helped me make sense of what was going on.
Once you are starting to make sense of it all, look for support groups, but be careful of what groups you join. For me I wanted to be in with UK groups as I am from the UK and other countries and their benefits and health system are very different to ours. There are so many resources out there that it can be overwhelming, but make sure when researching you are using a reputable resource. My first call even now is the MS Society. I have yet to go to my local MS group but I would strongly recommend looking for one on the MS Society website. Don’t be afraid to reach out for help if you need it.
Being diagnosed with MS isn’t easy (the words of my Consultant). It is going to be hard to accept this is your life now, I still have my moments where I struggle, but you will start to get a more positive outlook. Your life is not over. You just might need to make some adjustments so surround yourself with friends and family that will support you and help you make those adjustments. It amazes me how many of my friends make comments on accessibility now when prior to me having MS they wouldn’t have even looked.
Don’t let the unknown scare you, take it day by day, take time for you, cry and scream all you want if it helps. Listen to your body – if it is telling you to slow down and rest then do it as the pay back is not worth it.
You may have MS, but it doesn’t have you. You will have good days and you will have tough days. You can still do the things you love. Embrace the strength you never knew you had, because you will find it. Trust me – it’s there.
If you could sum up your outlook on life in one statement, what would it be?
Try and treat yourself kindly and love yourself – you only have one you and you are pretty special.