Looking after your mental health

At the BPA, we know that living with any chronic illness or disability can have a huge impact on mental health, and that rare disease in particular brings its own set of emotional challenges. A 2018 report by Rare Disease UK found that 95% of survey respondents have felt worried or anxious, 93% have felt stressed, 90% have felt low, 88% have felt emotionally exhausted, and 70% have felt at breaking point due to their rare disease. And a recent study on the emotional wellbeing of people living with acute hepatic porphyria (AHP) found that moderate to severe depression was present in 58.7% of patients surveyed, and moderate to severe anxiety in 48.9% of patients.

There has been a huge effort to raise awareness of and destigmatise mental health issues in recent years, and, as a result, practical information and advice to help us manage our mental health is more widely available than ever. It can still be hard, however, to find resources that specifically address the additional emotional challenges of living with a long term physical health condition.

This page aims to bring together various resources that can help you to manage your mental health and wellbeing and live well with porphyria. There are four sections covering the topics of lifestyle, pain management, connecting with others, and financial support.

LIFESTYLE

There is a lot of general advice out there on how lifestyle changes to diet, sleep, and exercise can help you manage your mental health – but not all of it takes into account limitations to these areas of life that can be caused by illness and disability.

Browse our choice resources below on managing lifestyle factors to improve your mental health.

You can find more general guidance on looking after your mental health, symptom management, and other lifestyle factors on our Living with porphyria page.

DIET AND SLEEP

Read our porphyria-specific advice for diet and sleep, including tips for managing nausea and improving digestion.

Listen to this podcast episode on chronic illness and sleep by The Rest Room, which offers advice catered to anyone who experiences fatigue, ‘painsomnia’, or other impairments which may make general sleep hygiene advice – such as only using your bed for sleeping, or increasing your physical activity – less accessible.

PHYSICAL ACTIVITY

There’s a known connection between physical health and mental wellbeing – the NHS recommends physical activity as one of the 5 steps to wellbeing. As well as being good for your physical health and fitness, it can also improve your mental wellbeing by raising your self-esteem, helping you to set goals or challenges and achieve them, and causing chemical changes in your brain which can help to positively change your mood.

Even if you are restricted to what you can do, try to make an effort to do some level of activity every day. For some people that might be a run or a cycle, but for some it will be simply climbing the stairs a few more times in the day. Visit the NHS website for practical guidance on a range of adapted exercises for varying ability levels.

If you experience chronic pain and fatigue, it is important to pace yourself while engaging in physical activity to help reduce flare-ups and the feelings of frustration that may come with them. You can find more guidance on pacing in this NHS resource on pacing and goal-setting.

If you are able to access it, spending time in nature can also increase wellbeing. Watch Freddy’s story below from Forestry England on how getting out to the woods has helped her recover from injury.

Physical activity with the skin porphyrias

Patients with EPP are at increased risk of thinning of the bones, known as osteoporosis. The British Association of Dermatologists recommends regular weight-bearing exercise indoors and regular vitamin D blood tests for those affected:

“Patients with EPP are at risk of thinning of the bones (‘osteoporosis’) developing, not just in older patients but sometimes in patients as young as those in their thirties. This is important because it can lead to some bones breaking fairly easily.

There are two reasons for this. One is a lack of weight bearing exercise because of the difficulty going outside. The second is that most patients with EPP have a low level of vitamin D, because sunshine causes vitamin D to form in the skin. You should make sure that you do enough weight bearing exercise, even in the spring and summer (either outside when it is dark or inside on an exercise machine). The exercise should be weight-bearing i.e. involves walking or running.

You should have your vitamin D level in your blood checked at least once a year. Most patients need vitamin D3 supplements in the long term to keep the vitamin D level high enough. The usual dose that is needed is 1000 Units/day of vitamin D3. Vitamin D3 supplements are widely available from health food shops and chemists.”

For more information on diet, sleep, and physical activity for the skin porphyrias, check out this Q&A session from our BPA Connect event in 2020, in which porphyria experts answer patient questions on all of these topics:

PAIN MANAGEMENT

Porphyria is known to cause chronic pain, acute muscle weakness, and fatigue, all of which can have a negative effect on mental health. A recent study of acute hepatic porphyria (AHP) patients found that moderate to severe depression was present in 58.7% of patients surveyed, and moderate to severe anxiety in 48.9% of patients. Among patients who reported pain, fatigue, and muscle weakness, 94.3%, 95.6%, and 91.4%, respectively, reported that these symptoms limited daily activities.

There are a number of resources available to help you manage chronic pain. Check out the videos below from our BPA 20^th Anniversary Festival in 2019, which provide practical advice for young people and adults from chronic pain expert Dr Deepak Ravindran.

Other pain management strategies that EPP patients have told us they find helpful include:

Applying menthol products to affected areas such as Tiger Balm and Deep Heat
Applying heat or cold/ice to affected areas (depending on which is more tolerable for each person), using commercially available items such as heat pads or cooling mats, towels, and mattresses.

Different things will work for different people, and it is often a matter of trial and error to find what works best for you. We recommend always consulting with a doctor before beginning any new treatment.

SELF-COMPASSION

“When you’re feeling good, write advice for your hardest days.”

Read AHP patient Claire’s guidance on using self-compassion, mantras and guideposts to get through the most difficult days with chronic pain and fatigue.

READING FOR WELLBEING

There are also a number of self-management books designed to help people cope with chronic pain as well as the emotional challenges of living with a long term condition.

An expert-endorsed book collection called Reading Well for long term conditions is available free from public libraries across England and Wales. The collection also contains books aimed at those with caring responsibilities, and many titles are also available as ebooks and audiobooks.

Visit the Reading Well website to find out more or ask at your local library.

Book covers of Reading Well titles available to browse at the specified link.

CONNECTING WITH OTHERS

Isolation is a very common feeling among those living with a long term condition, and particularly rare disease. A recent study of AHP patients found that patients surveyed indicated that their condition increased their feelings of isolation and had a negative effect on their relationships with other people. A 2019 study of young EPP patients and their families found that although the diagnosis can be very isolating and burdensome, particularly due to the ‘invisible’ nature of it, meeting others with EPP can provide a great source of support and information, especially for newly diagnosed families.

The NHS recommends connecting with others as one of the five steps to wellbeing. Good relationships can help you to build a sense of belonging and self-worth, give you an opportunity to share positive experiences, and provide emotional support and allow you to support others.

At the BPA, we aim to provide a safe space for anyone affected by porphyria to connect with others and benefit from both medical expertise and peer support. We offer a number of services and support groups and run regular events to bring together the porphyria community:

HELPLINE

Our email and phone helpline support team are ready to provide information, guidance and support to patients, families and medical professionals.

Email: helpline@porphyria.org.uk

Phone: 0300 30 200 30.

Sign up to the BPA newsletter for biannual updates and catch up on previous editions.

SOCIAL MEDIA

Connect with us on social media for regular updates and news from the BPA:

FACEBOOK PEER SUPPORT GROUPS

Connect directly with others in the porphyria community by joining our peer support groups:

General BPA Facebook group (all porphyrias)

EPP Facebook group (EPP only)

EVENT: 12-13 OCT 2024

Join us for BPA Connect Alfresco: a residential weekend away that will provide safe outdoor activities for children and young people affected by EPP – though all are welcome to get involved in a challenge or two!

When: 12-13 Oct 2024
Where: Thorpe Woodlands Adventure Centre, Thetford, Norfolk

To find out more and register your interest, visit our events page.

FINANCIAL SUPPORT

Money worries can have a huge impact on mental health, especially in a cost of living crisis. A recent survey carried out by the Mental Health Foundation found that, in the past month, one in ten (10%) of UK adults are feeling hopeless about financial circumstances, more than one-third (34%) are feeling anxious, and almost three in ten (29%) feeling stressed.

Those living with disability are particularly vulnerable to financial difficulty. A recent report by disability charity Scope found that the extra costs of living with a disability amount to £975 per month (per disabled household), and this figure rises to £1122 if current inflation is taken into account. Naturally, the pressure on disabled households to meet these costs makes it harder to have a good standard of living. It makes it harder to build savings, and it makes it difficult to plan for the future, all of which impacts mental health.

The BPA has practical resources available to help with financial issues when living with porphyria:

PORPHYRIA-SPECIFIC RESOURCES

Read our help with health costs page, including condition-specific leaflets on benefits and concessions for EPP and the acute porphyrias.

OTHER RESOURCES YOU MAY FIND USEFUL:

The Scope helpline, which offers free expert energy and water advice to disabled people.

The Mental Health Foundation guidance for people experiencing financial strain.

Guidance on money and mental health from mental health charity Mind.