Strangers comment on my gloves – but they don’t know the truth

Karen Raney-Marr

Published January 23, 2025 6:30am Updated January 24, 2025 10:31am

I was standing by a fridge in the supermarket for my weekly shop when a cold, tingling sensation spread through my fingers.

One by one, they started to turn a blue tone, which quickly escalated into pain. My lips also took on that blue tinge, and my ears, although not blue, started to hurt too.

I realised then I needed to finish my shopping quickly and return to the warmth of the summer sun outside, so I quickly grabbed what I could and headed to the tills.

It’s a feeling I now know all too well.

I’ve been living with Raynaud’s disease for as long as I can remember.

It’s a condition where the blood vessels in your extremities constrict in response to changing temperatures or stress, limiting blood flow to the fingers, toes, and sometimes other parts of the body. In the UK, Raynaud’s affects up to 10 million people, but many live with it undiagnosed.

I was first officially diagnosed with Raynaud’s at 18, but the signs had been there long before. As a child, my fingers would turn white or blue, and I’d get tingling sensations that would lead to numbness and pain.

I remember being at a water park as a child, in line for one of the slides, when a lifeguard asked if I was OK because I looked really cold, since my hands, lips and knees were blue. I brushed it off saying I was fine – partly because I was with friends and embarrassed, but also because I had got used to it. It was just what happens when I go swimming.

Karen Raney-Marr: I suffer with Raynaud's — I put on my thick ski gloves to warm my hands up, but they get in the way (Picture: Karen Raney-Marr)

After being diagnosed and trialing medication, my GP referred me to my local rheumatologist. Despite ruling out any secondary cause for my Raynaud’s, I was still struggling with the symptoms and finding it hard to carry out day to day tasks such as doing up the zip on my coat.

I was then prescribed several other medications to try, including different types of blood pressure tablets and natural therapies.

I’ve even tried Botox injections as part of a medical trial.

Unfortunately, none of those medications proved to be tolerable because of side effects such as headaches, light-headedness and nausea.

I reached a point where things had got so challenging I was admitted to hospital and started on a hospital-based treatment with a drug called Iloprost.

Today, I’ve been on Iloprost for 15 years. It’s used to improve blood flow and reduce the severity and number of Raynaud’s attacks. It also helps to heal my chilblains – which are the swollen painful areas on my fingers caused by the restriction in blood flow.

I undergo regular infusions of the medication, as a day patient at my local hospital, every 3-4 months. Yet, in spite of all these treatments, I still get daily attacks.

They can strike when I’m getting in or out of the shower, entering an air-conditioned space, or when there’s a small breeze on a hot day. When I put on my thick ski gloves to warm my hands up, they get in the way. It’s a lose-lose situation that can make even the simplest tasks really frustrating.

I learnt quickly that I had to adapt my life around Raynaud’s.

Strangers often feel the need to comment on my gloves, and when they say things such as ‘surely it’s not that cold’, I often explain that I have Raynaud’s.

There are times where I just wish I could dress ‘like a normal person’ and take a day off from Raynaud’s, so I can wear that nice outfit for an occasion and not be trying to match a jacket and gloves to what should be summer wear.

Over the years, I’ve learnt to accept that stress can trigger an attack too. It’s one of the hardest things to control because the anxiety and pressure that comes with daily life can intensify the symptoms.

When going for a recent small operation, the Raynaud’s was being triggered by the stress and anxiety of being at the hospital. It meant I needed extra warming blankets to support my blood vessels to dilate to give the anaesthetist any hope of getting a cannula – a tube inserted for fluids – in my hand.

It was another example of a vicious Raynaud’s cycle. I was anxious he would not be able to get a cannula in, but the more anxious I got, the more my veins would remain constricted, therefore making it more challenging.

As for the future, I really hope there will be more research into the cause and ultimately, better treatments developed for Raynaud’s, while I have to carry on dressing in an array of summer and winter gloves.

Concerned you may have Raynaud's?

Take an online test to see whether you could have Raynaud’s here.

Living with Raynaud’s is all about finding ways to manage and adapt. It’s about understanding your triggers and making changes to protect yourself.

If you’re living with Raynaud’s and haven’t been diagnosed, I want you to know that you’re not alone. It’s OK to seek help, and there is support available.

For those who might be experiencing symptoms like I’ve described, I encourage you to take SRUK’s online test to find out if it could potentially be Raynaud’s and talk to your doctor if you think it is.

Raynaud’s may not be widely known or understood, but it’s real, and it affects many people. It’s time for more awareness, more research, and more support for those living with this condition.

Don’t brush it off or wait for it to go away. Early intervention can make a big difference in managing the condition.

The help and support I got from the team at the Royal Free (and now my local hospital where I have treatment) has been vital in supporting me to be able to cope with the challenges associated with having such severe Raynaud’s.