Coping with VHL: The Unseen Struggles

Written by Lily Meyers

A diagnosis of any kind can be shocking. It takes time to process, but a rare disease like von Hippel-Lindau syndrome (VHL) may need even more time to understand fully. VHL can affect much of the body and brain, which impedes mobility, memory, vision, and speech. There are plenty of resources on the physical implications, but the subject of mental health? Not so much.

In a recent study, it was found that VHL affects all important aspects of life including careers, travel, family planning, finances, and social activities. More than 10% feel like all these factors have been impacted permanently. It also revealed the impact it has on carers, with factors of their lives also impacted either frequently or permanently.

Understanding Von Hippel-Lindau syndrome

VHL is a hereditary condition wherein tumours and cysts form in many regions of the body. These kinds of tumours can be benign or malignant. It usually manifests in early adulthood, but the early indications may emerge at any age. The average is 26.

The kidneys, central nervous system (CNS), pancreas, retinas and adrenal glands are often affected, but tumours can appear on other organs. Medical screenings can help detect it, and help to formulate the next steps.

VHL and Mental Health

Around 72% of rare diseases are genetic, making regular screening a must, but waiting on results can also be draining – the fear that the gene has been passed down is a constant companion. If this is the case, the guilt can be overwhelming.

There are also changes that come with the tumours or repeated treatments. When things we once took for granted become affected, there may be a grieving of sorts. For example, the loss of mobility and vision. Reflecting on life pre-diagnosis can bring about a feeling called “loss of self”. Tumours can take their course quickly, and the changes associated equally as fast. This can be hard to get used to.

The unpredictability of VHL can cause great anxiety and worry. An ‘out of control’ feeling can cause people to spiral into low moods, furthering potential isolation and depression. In fact, more people were recorded to have had permanent impacts on their mental health during treatment, as opposed to dealing with the symptoms of VHL. A 2022 study showed 3% of patients permanently suffered with clinical depression due to treatment, compared to 0% of those just coping with the symptoms.

For those who are carers to people with chronic illnesses like VHL, it can be tough to remain positive. Especially in the face of declining health. 40% to 70% have clinically significant symptoms of depression.

Coping with Chronic Illnesses

There’s no cure for VHL. However, this doesn’t mean that there aren’t ways to cope.

Finding people to relate to, whether online or in person, can be therapeutic in itself. For example, support groups. These can help by giving a feeling of recognition and a sense of community. It can also help to share your story. (It might feel intimidating at first, so do so when you’re ready.)

It’s not uncommon for people to conceal negative emotions but bottling it up can be damaging too. A trained professional can help work through difficult feelings and normalise opening up.

Many would agree that staying social is important. But remember that your health is more so. Make time for yourself outside of therapy and support groups. Feeling helpless can be all-consuming, so make yourself a priority. People sometimes change their diet, take up exercise, or embrace meditation. Stressing about finances can put even more strain on mental health, so getting advice can help. More so if you’re concerned about those that depend on your income.

Keeping on top of regular medical screenings must also become routine. It can be exhausting, but it’s invaluable for catching new growths and monitoring existing ones so that prompt action can be taken if needed.

Respite care is also a valuable service for those with chronic illness and their families. It offers carers a break, allowing them to rest and recharge.

Conclusion

Understanding the mental impact of VHL may help in the dialogue for all chronic diseases. The hope is that it will lead to a better support system for patients going forward. For now, donations and funding for more research into fighting illnesses like these is a must.

If you or someone you know has VHL, click here to see how we can help.

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