Maintaining mental health while managing pain: A haemophilia story

It is easy to think of haemophilia as strictly a physical condition. On the surface, it involves bleeds, affects joints and often requires injections.

While there is no doubt about the physical side of haemophilia – see for instance this blog post – in this blog post we are going to look at another, not-so-visible side of haemophilia: the pain it causes, and how that might cause mental health problems such as depression, anger and anxiety.1

 

“Unfortunately, pain has become part of my life but I have learned to live and cope with it, as best I can.”

Liina Toome from Estonia has factor VII deficiency.12

 

This is general disease awareness and should not be understood as medical advice. If you experience symptoms of COVID-19 or have questions, doubts or concerns, you should contact your doctor. Always follow the advice of local authorities.


Published 06 June 2020 | 3 min read
 


Emotional or mental health is important, perhaps as important as physical health. When mental health is impaired, thoughts, feelings and behaviours can themselves turn into life problems rather than providing a window through which one may look and make sense of life.1

It is hard to manage physical symptoms, but even harder doing so while hardly having enough energy.

Fortunately, the haemophilia community has already done much to address and propose solutions for mental health issues. Let’s take a bird’s-eye view of the whole situation before finding out how mental health can be promoted for the individual.

1. Depression and pain

Pain is one of the most common symptoms for people with haemophilia (PwH). In one study, 89% of PwH said that pain recently interfered with their lives.2 For 50%, the pain is constant.3

Nearly as many PwH, namely 47%, report psychological or psychiatric conditions.4

But does pain cause psychological problems? In the case of depression, a common psychological condition for PwH, its relationship with pain has been well studied. According to one estimate, 1 out of 2-3 people who suffer from chronic pain also have a major depressive disorder.5

While simply having a chronic disease can put a person at greater risk of depression6 for some PwH the mood impact comes suddenly.

89% say pain interfered with their lives

One young man with haemophilia remembers clearly the shock of finding out what exactly had to be done about his loss of mobility and muscle mass:

“I had to start using crutches. A feeling of deep sadness took over my entire body, but at the same time I was comforted by the kind words from the physiotherapist. I remember her telling me that if I kept up with the exercises, I would get my life back.” (Jhonatan Andres Ibarra from Columbia has severe haemophilia A.)12

As in Jhonatan’s case, the best healthcare professionals help PwH address both physical and mental health challenges. However, by learning a few coping mechanisms, PwH need not rely on professionals to help them through things like sadness. Caring for one's own mental health is a skill that can be acquired and self-administered.

2. Anger and pain

For many PwH, the path to mental healing goes via acceptance and understanding.

It helps recognising that there are valid and understandable reasons for mental vulnerability and mental health problems.7 Rule number 1: Being prone to unpleasant and undesirable emotional responses is not a character flaw.

Whether diagnosed with depression or not, anger is a fairly common emotion for many PwH.1 Pain takes people out of their flow and can significantly reduce their quality of life. Therefore, whether a person experiences sporadic or constant pain, it is understandable that it may make them angry.

And let’s not forget that simply living with the knowledge that pain may interrupt at any moment can be stressful and difficult not only for PwH but for their carers and relatives, too.

Experiencing unpleasant and undesirable emotional responses is not a character flaw

Another young man living with haemophilia recalls an experience with pain, occurring during a workout session, as a particular unpleasant turning point in his life:

“My ankle became very swollen very fast. I couldn’t walk or even move my toes without agonising pain. … I had never actually felt like a haemophiliac before that day, so when something severe finally happened, I wasn’t prepared for it, I couldn’t help but think – this is the end of my active years.” (Adolf Kroll from Estonia has severe haemophilia A.)12

While at first, the event had mental health consequences (hopelessness, grief and social isolation), Adolf was eventually able to overcome his mental health challenges and regain his appetite for life.

It may be helpful to realise that, although normal for people with chronic illness, anger is not a constructive emotion. Like depression, it can get in the way of positive things and deprive PwH of the mindset required for living and dreaming big.

But by finding out how to rise above mental health issues, PwH may free up mental energy and use it appropriately – namely for exciting and fulfilling things.7

Before addressing how this may happen, let’s look at a third mental health problem common to PwH.

3. Anxiety and pain

Feeling anxious is a natural response to the fear of losing something valuable or cherished. From a mental health perspective, haemophilia can take on a threatening appearance and may trigger a person’s fear of losing:
 

  • function or ability
  • relationships
  • independence
  • financial security8
Acceptance and understanding are central to promoting and maintaining mental health

Aside from these specific loss-related fears, there appears to be an association between chronic pain and anxiety, whether the pain is caused by haemophilia or not.9

As with the other mental health problems discussed here, anxiety may not afflict PwH exclusively. Their relatives and carers can be in need of anxiety-relieving coping mechanism, too.

And again, acceptance and understanding turn out to be part and parcel of promoting and maintaining mental health. One carer, the mother of an infant with haemophilia, writes:

“I knew the only way to deal with this was to learn – learn what to do, learn about this disease. With the help of an incredible medical team my fears and anxieties began to reduce – knowledge really is power!” (Marianna Ilves’ son, Martin, from Estonia, has severe haemophilia A.)12

In thinking about pain, it is natural to assume that the pain has its origin in an affected body part and only later has a compromising effect on the person’s mental health. But in the case of anxiety, the process may actually run in both directions. That is, anxiety has been known to exacerbate (or at least maintain) the pain caused by a physiological issue such as bleed.9

In light of this potentially vicious circle, having a helpful strategy appears even more crucial.

That’s where we’ll go next.

Promoting mental health with cognitive therapy

First off, remember that it takes a qualified healthcare professional to diagnose a mental health problem.11 Self-diagnosing is neither advisable nor possible, although one can correctly observe mental health symptoms.

Here are some symptoms indicating different mental health problems:
 

  • Depression
    pessimism, hopelessness, fatigue, feeling worthless, insomnia, irritability, suicidal thoughts13
  • Anger
    increased and rapid heart rate, sweating, grinding the teeth, headache or stomachache, shaking, dizziness14
  • Anxiety
    feeling nervous, restless or tense, increased heart rate, having a sense of impending danger, feeling week or tired, having the urge to avoid things that trigger anxiety, sweating15
MBCT can help people swap undesirable reactions/thought for constructive ones

So how can these interrelated symptoms be addressed?

Let us look at the benefits of MBCT (mindfulness-based cognitive therapy), a mental health promoting system recommended by The National Institute for Health and Clinical Excellence and useful in the treatment of chronic pain, depression, anxiety and panic.10

MBCT helps individuals question and reappraise thoughts, feelings and behaviours they have related to their pain.9 Gaining some insight into those is the first step toward putting adaptive and constructive reactions and thoughts in the place of unpleasant and undesirable ones.

While a comprehensive description of MBCT cannot be given here, the 10 tips below may serve to get PwH at least started on addressing mental health problems:
 

  • Pay careful attention to your emotions and reactions. When you feel angry, frustrated or sad, try to address the cause or minimise your exposure to it.1
  • Try actually telling those around you what you’re going through emotionally. Keeping it inside can lead to stress or anger.1
  • Make time for positive things. Be thoughtful and kind to yourself when scheduling work, play and rest.1
  • Forgive yourself and others for mistakes. Try to actively notice the good things and nice people in your life.1
  • Play to your social side. Build connections to people who are helpful and kind. Online networks for PwH can be useful.1
  • Notice when you are meaningfully engaged, and with whom. Then try to spend more of your time meaningfully.1
  • Exercise regularly, eat healthy meals and try to get enough sleep.
  • Don’t experiment with drugs or alcohol.1
  • Learn deep breathing, meditation or try mindfulness training to manage and protect yourself from stress.1
  • Give yourself enough time to think before you act or speak. Try not to do or say anything unless you feel as calm as possible.1

 

And remember that everyone is different. Be sure, therefore, to check in with your healthcare professional to discuss how MBCT can benefit YOU.

In mental health, the way out is through…

As with anything valuable and meaningful, resolving a mental health situation is not a quick and easy job. Quite the contrary, it is wise to approach it with humility and patience.

On the other hand, here are some things to be excited about:
 

  • Over time, progress is not just possible, but likely.
  • If needed, your healthcare professional can assist and help you.
  • For many people, the only thing needed to achieve good mental health is the mind itself.
  • In other words, no special tools are necessarily required. Everyone stands at least a fighting chance.
  • Experiencing difficulty probably means you’re doing something right. Don’t be discouraged.


To quote an old phrase, the way out is through.
 

“I have never felt as good as I feel today – I have lots of friends, I love my job and I truly feel that limitations, frustrations and fears live only in our minds.” – Carlos Alberto Rios Rondon from Columbian has haemophilia A12

In this article you will find links to third-party material not owned or controlled by Novo Nordisk. We are not responsible for the content or the accuracy of the information provided and have no control over the privacy policies or terms of use of such third-party sites.


References

  1. https://haemophilia.org.uk/support/day-day-living/patient-support/healthy-living/positive-mental-health/emotional-health/
  2. Garrido C et al. PO-TU-218: Quality of life (QOL) and well-being of hemophilia patients and parents managing hemophilia: Hero study analysis. Haemophilia 2012; 18(3):177.
  3. Novo Nordisk. Quality of Life and Well-Being of People with Haemophilia and Parents Managing Haemophilia: HERO Study Analysis N/A 2012;N/A: 1.
  4. Forsyth AL et al., Haemophilia Experiences, Results and Opportunities (HERO) Study: survey methodology and population demographics. Haemophilia 2014; 20:44-51.
  5. Thorsten Giesecke et al., “The Relationship Between Depression, Clinical Pain, and Experimental Pain in a Chronic Pain Cohort,” Arthritis & Rheumatism 52 (2005): 1577-84. Cf. also studies discussed in Jeffrey Dersh et al. “Chronic Pain and Psychopathology: Research Findings and Considerations,” Psychosomatic Medicine 64 (2002): 773-86.
  6. https://hemaware.org/mind-body/putting-spotlight-mental-health-and-bleeding-disorders
  7. Paul Gilbert, Overcoming Depression: A self-help guide using cognitive behavioural techniques, 3rd ed. Hachette UK, 2009, chapter 19.
  8. Donna R. Falvo, Medical and Psychosocial Aspects of Chronic Illness and Disability. Jones & Bartlett Learning, 2005. Page 7.
  9. Ilene Morof Lubkin, Pamala D. Larsen (ed.), Chronic Illness: Impact and Interventions, Jones & Bartlett Learning, 2006, chapter 4.
  10. https://www.bwwmind.org.uk/wp-content/uploads/2018/08/Understanding-Anxiety-and-Panic-Attacks.pdf
  11. https://hemaware.org/mind-body/putting-spotlight-mental-health-and-bleeding-disorders
  12. My Haemophilia Story booklet (Adolf Kroll), Changing Haemophilia, Novo Nordisk
  13. https://www.webmd.com/depression/guide/detecting-depression#1
  14. https://www.mentalhelp.net/anger/recognizing-signs/
  15. https://www.mayoclinic.org/diseases-conditions/anxiety/symptoms-causes/syc-20350961