Resilience Over Adversity: The Mental Toll of VHL

Living with a rare disease can be challenging enough, especially when it impacts you physically. But for those living with VHL disease, a rare form of kidney cancer, their determination, resilience, and strength is tested daily. In a recent study involving 123 family members from 48 VHL families, 50% of those with VHL mutations and 36% of those without experienced high levels of distress.

The discourse surrounding rare diseases such as VHL has a lesser focus on the mental implications that come with diagnosis, as well as proceeding with life afterwards and genetic testing.

What is VHL?

Von-Hippel-Lindau syndrome (VHL) is an inherited disease caused by a singular rare gene mutation, called the VHL gene. It leads to tumours in multiple organs, including the brain, spinal cord, retina, kidneys, pancreas, and adrenal glands. The frequent hospital visits, appointments, and surgeries along with the uncertainty of the disease’s progression can be damaging mentally. The emotional impact of VHL is as equally important as the physical damages and should not be underestimated.

VHL and Mental Health

• Anxiety and Uncertainty

Living with VHL comes with a strong sense of uncertainty. Not being able to predict any new growths can warrant a significant spike in anxiety levels. Undergoing regular screenings is also common for those with VHL, but although this can bring reassurance, it can be incredibly exhausting. With approximately 72% of rare diseases being genetic, awaiting the results of you or your loved ones can be draining.

• Depression and Isolation

When mobility is hindered, it’s often easy to become accustomed to being alone. The physical and mental impacts of a chronic illness can aid the descent into isolation, and lead to social lives and job prospects to suffer. A study conducted in 2022 revealed that those with a physical and mental health diagnosis were more than three times as likely to experience chronic loneliness compared to those without.

• Grieving and Loss

VHL comes with a strenuous amount of personal loss, such as multiple function loss in organs and loss of sight, and people may begin to also mourn their previous lives pre-diagnosis.

Ways of Coping

Those who are diagnosed with a rare disease like VHL search for well working strategies to help find ways of relief and comfort:

• Online and In-Person Support Networks

It’s not easy to find security in loved ones when battling an illness like this, especially if several problems arise simultaneously. Online support groups can be a valuable outlet to seek relatability. Finding hope in other people’s stories can help you to feel understood and validated.

You can find more about our online communities here.

• Adapting Lifestyle

This can include an array of aspects, from prioritising self-care and using mindfulness techniques, to setting realistic and achievable goals. Developing healthy habits like journaling, meditation and affirmations can work wonders in boosting a positive mindset through this illness.

• Financial Practicality

Planning finances when dealing with a chronic disease can be a tough situation in itself. Navigating different bills and costs can easily become overwhelming and take over your mind, making it harder to focus on recovery. Whether it’s through seeking professional guidance or making your own plan, having a documented strategy of your money can not only alleviate any extra stress, but help to gain back some control.

If you need advice or information about financial planning, you can find out more here.

• Professional Support

Support groups work tremendously for providing a sense of community, but having a therapist that’s individual to you will help to normalise opening up and speaking freely. Although a positive attitude is encouraged, it can push back any underlying anxieties and defer you from being honest with your feelings.

Having a rare disease such as VHL impacts so much more than physical health. The protection of both young and old minds when fighting illnesses like this has never been more important, and the discussions surrounding how people cope and what needs to be done better has to be voiced louder.

If you or someone you know needs additional support with the side effects of VHL on kidneys, you can contact us here.

Blog written by Lilly Meyers, a freelance writer currently focusing on shedding light onto what are classed as ‘rare diseases’, such as VHL, and the current discourse on mental health alongside it.