“It takes a lot of time and preparation behind the scenes for me to hide my disability”

This Disability Pride Month, Charlotte is asking for more compassion towards people with invisible disabilities.

I was diagnosed with relapsing remitting MS in 2018 after an onset of symptoms in 2017. Initially my main symptoms were numbness and tingling from the waist down and in my hands. I then developed problems walking due to weakness in my legs and foot drop. 

I experience fatigue daily, and at its worst all the other symptoms from my original relapses creep back in. 

I’m lucky in a way that most of the time I don’t physically look like I have a disability: my MS is usually invisible. What many people don’t realise is that it takes a lot of time and preparation behind the scenes for me to appear like I’m not suffering from pain or fatigue. 

Read more about Disability Pride Month

Planning ahead

For me, managing my MS is all about budgeting energy, being organised, and planning ahead. The planning process for getting myself and my primary-aged daughter out of the house in the morning starts a good 24 hours ahead of time. I get as many things as I can ready the day before: uniform out, snacks packed, sometimes breakfast prepped. I pack up and put my heavy work equipment by the door. I even move my car into a certain position on the driveway, so I’ll have enough space to get the correct angle to lift the biggest piece of equipment in on my own. 

Even planning small things like that ahead of time makes such a difference. It helps me save energy and means I might feel – and look – a bit less fatigued later. More importantly, it means I can achieve the most basic requirements to function as a single, working mum. 

Read more about spoon theory

Eating well and exercising helps me manage my MS symptoms and makes me appear ‘well’ to others. As part of my job, I'll often appear in photographs or videos, so making sure I appear healthy and full of energy is important! 

Hiding my MS in the workplace

I don’t share that I have MS with people linked to my work because I don’t want prospective clients to worry it may affect my performance. Sometimes I feel less than my best whilst working but I hide it, put my make-up on, and appear like nothing's wrong. This can be exhausting in itself! 

My job is so physically and mentally demanding (not to mention niche!) that it’s difficult to find cover from someone who could provide the exact same service. But I have a select few people I can ask to step in for me, should I need it. It’s the one thing I refuse to give up though because I’ve worked so hard my whole life to achieve my dream career. It supports me and my daughter and that is enough motivation to work through even the hardest of times with my MS. 

Learn more about employment and MS

Some days it's hard to hide my MS

Some days I can’t hide my MS. I turn up to the school gates and people say ‘oh god you look absolutely awful’ or ‘why are you limping, have you hurt your leg?’ Some of these are people who know I’ve got MS. I can still be wearing my make-up and so the penny won’t drop and people will assume it’s something else. 

But when it's visible, I try not to expose it to other people. If I’m having a really bad day, I’ll try to stay inside and go to bed. The laundry, cleaning, cooking, and all my other domestic jobs will still get done, and I’ll do all the things to care for my daughter, but it will be tough. I always think to myself, if I can manage these basics today, I’m doing well. 

So most people don’t see me when my MS is at its worst. Perhaps my daughter at most, which does bring on an element of mum guilt. But I hope that one day she'll see how her mum was determined, even through the worst times, and it will build resilience and empathy in her as she grows up too.

Understanding invisible disabilities

I’ve been verbally abused in the past by people who didn’t believe I was disabled because I look well. I’ve been called obscenities and told that I’m lying or don’t really have a disability, and that hurts. I wouldn’t wish this on anyone! The ignorance around invisible disabilities and some people’s unwillingness to try to understand them is so disheartening. I’ve got very thick skin but being attacked like that left me feeling vulnerable. Some of the comments were made in front of my daughter, which was really unsettling for her.

One person said I couldn’t be disabled because I can still drive. Someone else accused me of not needing my Blue Badge. I don’t use my Blue Badge all the time. But in those moments where I’m fatigued or in pain and I struggle to walk even short distances, my badge is a lifeline. 

When people made those comments, I felt I had to explain my disability and justify why I deserve a Blue Badge. No one should have to do that. I felt misunderstood and no matter how hard I tried to explain what it can be like to have an invisible disability, they didn’t want to listen. I even offered to talk to them about my MS, or send them literature about the condition. But they weren’t interested. That made me feel frustrated and actually quite angry. How can you judge something or someone without knowing the full facts?

Raising awareness

I don’t discuss my MS with people regularly, and I didn’t know much about it before my diagnosis either. When I did receive my diagnosis, I took the time to educate myself on what it entailed, how symptoms appear in others, and how I can live with it as best as possible. 

I also started volunteering with the MS Society, helping to raise awareness by speaking publicly about my own experiences. I hope I can break down the barriers between people with and without the condition. 

Knowledge is power and to help others understand MS means I’ll be encouraging others to be more understanding of people living with invisible disabilities.  

This Disability Pride Month, let's all take the time to consider how invisible symptoms might be affecting someone. If we can all build more awareness around hidden disabilities, then one day I won’t have to hide my disability from society, and everyone living with invisible disabilities will feel they can share more openly too.