Chronic Illness and Mental Health

About me:

I’m Emily and I’m an Integrative Therapist supporting people online in the UK. I found my way to therapy as a career as I found the relationships we build with each other and our relationship with our “self” to be fascinating. The relationship with myself has always been a challenge; Mental Health has always been something on my radar since my early teens but I didn’t link my physical health to it till much later in life, even though I’ve also struggled with my physical health for as long as I can remember. 

I was diagnosed with Complex Prolonged Migraines around 8 years ago, this was followed with a diagnosis of Fibromyalgia and recently Endometriosis. Chronic Illness quickly took over my life and I went from working a full-time job with a 1.5 hour commute, looking after 2 dogs, doing my Postgraduate course, and working 2 placements, to the pandemic, no job, finishing off my course and trying to focus on my health. To say it took a toll on my mental health would be an understatement! - want to know more about me check out my website here

So, I’m hoping this post can draw off my own experience, offer some information, and offer some guidance too in dealing with chronic illnesses and their impact on our mental health.

The Impact:

Our mental health tends to be impacted at every stage of a chronic illness journey, from looking for medical support when symptoms first begin to show, to learning how to live with the chronic illness and adapt your life.It only takes one doctor to really hear you to get the ball rolling in getting investigations, a diagnosis, treatment, and care, but unfortunately for many it can take years before they meet that doctor who will listen, leaving you frustrated, fed up, exhausted, and in pain physically, and emotionally.

Medical Investigation

The first impact on my mental health that I noticed was the self doubt and guilt I felt, this mostly came from the gaslighting and dismissal when looking for support via medical routes. We internalise our experiences and become exhausted advocating for ourselves. It can lead to thoughts like, “maybe I am making it up”, “maybe it isn’t as bad as I thought”, “Why do I always make such a big deal out of nothing”, however, you’re not alone in this and your experience, pain, and symptoms are valid.

According to a UK womens health survey- “More than 4 in 5 (84%) went on to tell us there have been times when they (or the woman they had in mind) were not listened to by healthcare professionals. It goes on to state further states around being misdiagnosed, dismissed, and preferences for treatment ignored (1). Similarly, an Australian study found a gender gap showing women were often waiting longer for investigations, dismissed, not listened to, misdiagnosed and more in comparison to men. A typical example of this is with endometriosis where the average time to get a diagnosis is 7-8 years (for me it was 17 years!). 

However this isn’t to say that men don’t have chronic illnesses; according to the Australian bureau of statistics, around half of all Australians have at least one chronic condition, 43.9% of these are men.

Diagnosis

Getting a diagnosis can be tricky, scary, daunting, and drawn out, so when we do get a diagnosis, this can be met with relief, frustration, joy, resignation, grief, all sorts of emotions, some of which may be unexpected. I felt like an imposter getting my diagnosis for fibromyalgia and for my migraines as there wasn’t a conclusive test they could do for me other than ruling everything else out, whereas for my endometriosis I was diagnosed via laparoscopy and so there was physical evidence - after all the dismissal, this felt important to me to feel like my pain and experience was real, but please remember your experience is real and you deserve support.

Learning to Live with Chronic Illnesses

The change in life before a chronic illness and the onset can be drastic, it really can feel like you are a completely different person. This stage has been the most difficult for me, it has meant a lot of cognitive changes to my mindsets and view of myself as well as physical changes. You may grieve your old self, your old life, but also the idea of the life you wanted for yourself, there may be things you were hoping to do that no longer feel accessible. The grieving process can be ongoing alongside your condition, it may get easier to manage but it will still be there as there isn’t a ‘fix’ for what you’re experiencing. You may have treatment for your condition, but with chronic conditions being long-term there’s rarely a cure, and so it is a big physical and mental adjustment in your expectations of yourself. The APA (5) suggests that having a history of depression can mean there is more prevalence for a psychological toll when adapting to a chronic illness than others, however overall most people will find this challenging regardless of previous mental health conditions.

What can help?

You might be thinking - so what am I supposed to do? - luckily there are many ways you can look after your whole wellbeing.

• Learn to listen and reconnect to your body and emotions as they are - a body scan exercise can be helpful 
• Increase your support network, talk to family, friends, your trusted GP, support groups etc.
• Speaking to a mental health professional is always recommended to make sense of your emotions
• Advocacy in appointments whether you do this yourself or get someone else to advocate on your behalf, being heard is important
• Heat and Ice packs for pain, naps, massages, acupuncture etc. all can help ease symptoms
• Learn your pain management and tolerance in relation to pain killers which work
• Pacing is important so you don’t end up in a boom-bust cycle of over doing things and flaring up constantly and drastically 
• Be compassionate towards yourself - Chronic Illnesses are tough!
• Try to move each day, gentle and paced is recommended to begin with.
• Look into support at work - you may be able to get support through Occupational Health

References

1. https://www.gov.uk/government/consultations/womens-health-strategy-call-for-evidence/outcome/results-of-the-womens-health-lets-talk-about-it-survey (“Results of the 'Women's Health – Let's talk about it' survey”)

2. https://www.liebertpub.com/doi/10.1089/whr.2022.0052 (“I Just Want to Feel Safe Going to a Doctor”: Experiences of Female Patients with Chronic Conditions in Australia)

3. https://www.epworth.org.au/newsroom/reducing-time-to-an-endometriosis-diagnosis# (Reducing time to an endometriosis diagnosis)

4. https://www.abs.gov.au/statistics/health/health-conditions-and-risks/health-conditions-prevalence/latest-release# (Key findings on selected long-term health conditions and prevalence in Australia)

5. https://www.apa.org/topics/chronic-illness/coping-diagnosis (Coping with a diagnosis of chronic illness)

6. https://www.counselling-directory.org.uk/memberarticles/chronic-illness-our-bodies-and-us (Chronic Illness - Our bodies and Us)

7. https://www.painaustralia.org.au/find-support/care-in-community-1/painaustralia-support-groups-help-lines (Support groups in Australia and helplines)

8. https://www.patients.org.au/ (Australian Patients Association)

9. https://www.emilyduffytherapy.co.uk/post/what-is-pacing (What is Pacing?)

10. https://self-compassion.org/wp-content/uploads/2018/05/Sirois2016.pdf (The role of self-compassion in Chronic Illness Care)

11. https://www.mayoclinic.org/healthy-lifestyle/fitness/in-depth/exercise-and-chronic-disease/art-20046049 (Exercise and chronic disease: Get the facts)