How I cope with cold weather as someone with sickle cell disease

It’s almost winter again here in the U.K., and every year I’m shocked by the cold weather and its impact on my body. Winter has always been one of my greatest adversaries, and as the seasons shift, I’m reminded of how brutal this time of year can be for someone with sickle cell disease.

The drop in temperature brings a plethora of physical challenges. Cold weather constricts blood vessels, making it even harder for my already compromised blood cells to circulate efficiently. That can lead to painful vaso-occlusive crises. Additionally, the strain on my circulation can amplify the lack of oxygen-rich blood in my body, resulting in the fatigue I’m currently struggling with.

Tasks that were manageable during the warmer months, such as walking short distances, going to the gym, or completing errands, now leave me exhausted and aching. I don’t go out as often in the cold weather. Leaving the house is more complex, and I have to prioritize which events to attend.

Despite these challenges, I’ve found ways to navigate this difficult season. Physically, staying warm is my first line of defense. I’ve invested in thermal clothing, heating pads, and various blankets to stabilize my body temperature. I avoid prolonged exposure to the cold and always carry hand warmers to protect those extremities. Hydration is equally important, as it helps prevent my blood from becoming too thick.

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Mental toll

Winter slows me down physically, but mentally, it seems to trap me in a never-ending cycle of dread. There’s an underlying anticipation of pain or fatigue from the cold weather, which puts me in an isolated, protective mode. I find myself retreating from social activities, fearful that I’ll have a crisis.

However, the mental strain is compounded by the societal pressure to “push through.” Comments like “You don’t look sick” or “It’s just a bit of cold weather” can feel invalidating. Even when said with good intentions, such remarks can widen the chasm between myself and those who don’t understand the invisible battle I face. I often speak about pushing through, but when it comes to cold weather, I know doing so can have consequences.

I’ve found solace in therapy and mindfulness practices. Therapy gives me a safe space to vent my frustrations without fear of judgment, while mindfulness techniques help me remain present and less anxious about future crises. I also lean on my support network — friends, family, and fellow advocates who understand the nuances of living with sickle cell. Connecting with others with similar experiences reminds me that I’m not alone on this journey.

Emotional impact

Emotionally, the colder months often bring feelings of despair. It’s not just the physical pain or the mental stress; it’s the constant reminder that my condition dictates so much of my life. I feel robbed of experiences that others take for granted — snowball fights with friends, long winter walks, or just sitting in a chilly room without fear of triggering a crisis.

Plus, when I have a crisis, I feel like a burden to those around me. It’s a hard reality to grapple with, and it sometimes leaves me questioning my own resilience.

To counter these negative emotions, I work to find joy in small, manageable ways. Whether it’s curling up to watch anime, indulging in my favorite hot drinks, or journaling about the things I’m grateful for, these practices help me focus on what I can control. Celebrating small victories, such as a pain-free day, also helps me maintain a positive outlook.

Although I’ve been experiencing good health for an extended period, the cold weather reminds me that I’m not immune to the hardships of this condition; if anything, it makes me more acutely aware of them. But it also means I have a responsibility to show that there is hope, even in the face of challenges.

Winter may be a difficult season, but with preparation, support, and a commitment to self-care, it’s one that I can endure and help others survive, too.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.