SARCOIDOSIS AND MENTAL HEALTH

Sarcoidosis is a chronic health condition for around 30% of patients. Chronic, or long-term, conditions are conditions for which there is currently no cure, and which are managed with drugs and other treatment. Mental health problems are common amongst patients with chronic health conditions. This page explains what mental health is and how it can affect patients with chronic health conditions such as sarcoidosis. You will also find useful tools to help yourself and and tips on where to look for further support. 

The information on this page has been compiled with the help of SarcoidosisUK Nurse Jenny who has years of experience talking to people with both sarcoidosis and mental health problems.

What is Mental Health?

Mental health includes your emotional, psychological, and social well-being. It affects how you think, feel and act and so helps determine how you handle everything life throws at you, good and bad. Mental health doesn’t always stay the same and can change as circumstances change through different stages of your life.

If you experience mental health problems, your thinking, mood, and behaviour could be affected. Many factors contribute to mental health problems, including:

  • Biological factors, such as genetic makeup
  • Life experiences, such as illness
  • Family history of mental health problems

The most common mental health problems include depression, anxiety, stress and bi-polar disorder.

Mental health problems are common and living with them can be very tough. However lots of help is available, see below. People with mental health problems can get better and many recover completely. 

Why Does Mental Health Affect Patients with Chronic Conditions?

Our physical and mental health are inextricably linked and people who live with a chronic physical condition such as sarcoidosis are also likely to experience mental health problems. Some reasons why chronic conditions may impact mental health include:

  • The anxiety and confusion of a new diagnosis, or waiting to get a diagnosis
  • Adjusting to a new life living with sarcoidosis
  • Living with pain, fatigue and other chronic symptoms
  • Changes to social relationships, employment or finances
  • Social isolation
  • Low self-esteem
  • Stigma and discrimination

It is important to remember that mental health problems are common and are normal reactions to stressful and difficult situations.

When is an Evaluation or Treatment Needed?

Each mental health condition has its own signs and symptoms. In general, professional help might be considered if you experience:

  • Marked changes in personality, eating or sleeping patterns
  • An inability to cope with problems or daily activities
  • Strange or grandiose ideas
  • Excessive anxiety
  • Prolonged depression or apathy
  • Thinking or talking about suicide
  • Using alcohol or drugs as a way of coping
  • Extreme mood swings or excessive anger, hostility or violent behaviour

Urgent Mental Health Support

  • If you have been working with mental health professionals and have a crisis team number (or a care plan that gives you information on who to call in a crisis), call them.
  • If you need urgent care call the NHS on 111 or contact your GP. If it’s an emergency, call 999.
  • The Samaritans can help you talk confidentially about issues including mental health.  You don’t have to be suicidal to benefit from their support. Call free on 116 123 or email jo@samaritans.org. 
  • Mental health charity Mind has an urgent help toolkit with ideas to help you cope with difficult thoughts and feelings.

What Can I Do to Help Myself?

Step 1: Understand mental health and recognise any symptoms you may have. Use the tools and information on this page and the external links to help you understand more.

Step 2: Talk to someone about how you feel! Partner, friend, family member, colleague, SarcoidosisUK or a confidential support line.

Step 3: Consult your family doctor or make an appointment with a counselor or psychologist. With appropriate support, you can identify mental health conditions and explore treatment options, such as medications or counseling.

Many people who have mental health conditions mistakenly consider their signs and symptoms as nothing to worry about and avoid treatment out of shame or fear.

If you’re concerned about your mental health, don’t hesitate to seek advice, see below.

Find Out More About Mental Health and Get Support:

Help Yourself:

Mental Health Services:

Mental health services are free on the NHS; in most cases you will need a referral from your GP to access them. NHS mental health services explained.

If you’re living with sarcoidosis, the NHS long term condition assessment will tell you what help and support you may be entitled to. It will assess your situation and give you personalised advice and a printable checklist.

Self Management UK educates in the knowledge, skills and confidence needed to improve wellbeing. 

The Expert Patients Programme is a free self-management course for people living with any long term health condition.  It covers lots of topics that people with sarcoidosis may find helpful, including dealing with difficult emotions, relaxation techniques, action planning, managing common symptoms, and communication skills.  It’s available in many areas of England, so it’s worth asking your local council or GP surgery if there’s a course near you. Other areas may have similar schemes, usually called self management programmes, or schemes for people with particular symptoms, for example breathing problems.

EPP Cymru runs a Chronic Disease Self Management Programme, including an online course, in Wales.  

Scotland has a campaign to encourage self management called My Condition, My Terms, My Life.  It aims to encourage both people with a long term condition and the health professionals looking after them to adopt a self management approach.  

Mental Health and Substance Abuse:

Having sarcoidosis (or waiting for a diagnosis) can be tough, and some people turn to alcohol or other substances as a way of coping.  Many of these substances, including alcohol, may affect your mental health and can actually increase anxiety and stress.  There’s information on alcohol and mental health on the Drinkaware website.  

If you are concerned about your use of alcohol or drugs it can help to talk to someone.  The following helplines offer confidential advice and information.

EnglandDrinkline: 0300 123 1110  and Frank (drugs): 0300 123 6600 

ScotlandDrinkline: 0800 7 314 314 and Know the Score (drugs): 0800 587 5879

WalesDan247: 0808 808 2234

Northern Ireland: Addiction NI: 028 9066 4434

What Evidence is There for Mental Health Affecting Sarcoidosis Patients?

Those with a long-term condition such as sarcoidosis are two or three times more likely to develop mental ill-health. People with two or more long-term conditions are seven times more likely to experience depression than those without a long-term condition (World Health Survey, 2007).

Find out more about Mental Health and chronic health conditions from mentalhealth.org.

Read the Rare Disease UK Report on the effect living with a rare condition has on mental health. 

Further Reading:

Cox, C. E., Donohue, J. F., Brown, C. D., Kataria, Y. P., & Judson, M. A. (2004). Health-related quality of life of persons with sarcoidosis. Chest, 125(3), 997-1004.

Chang, B., Steimel, J., Moller, D. R., Baughman, R. P., Judson, M. A., Yeager Jr, H., … & Rand, C. S. (2001). Depression in sarcoidosis. American journal of respiratory and critical care medicine, 163(2), 329-334.

Goracci, A., Fagiolini, A., Martinucci, M., Calossi, S., Rossi, S., Santomauro, T., … & Pieroni, M. G. (2008). Quality of life, anxiety and depression in sarcoidosis. General hospital psychiatry, 30(5), 441-445.

Related content from SarcoidosisUK:

Nurse Helpline

The SarcoidosisUK Nurse Helpline exists to provide free, quality support and information to anyone affected.

Support

SarcoidosisUKhas a range of support services that may be able to help you with mental health problems.

Contact

We would love to hear from you. Please get in touch with any questions, comments or suggestions.

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