What is stress and how does it relate to chronic illness?
“a state of mental or emotional strain or tension resulting from adverse or demanding circumstances.”
Research has shown that two-thirds of us experience a mental health problem in our lifetimes, and stress is a key factor in this.
The 14th – 20th May is Mental Health Awareness Week. Hosted by The Mental Health Foundation, this year the focus is on Stress – are we coping? The Mental Health Foundation has produced a handy guide on How To Manage and Reduce Stress
Stress and chronic illness go hand in hand.
Continued stress wreaks havoc on your body. It can cause a variety of unexplained symptoms that are often not picked up and identified through tests. Similarly, when you become poorly stress rears its ugly head. Long waiting times, trying to find a diagnosis, trying to navigate the system, trying to adjust to your new way of life, trying to exist within your old way of life, money pressures, the list goes on and on…
Personal experience of stress
We will have all experienced stress at one time or another. It seems it goes hand in hand with life! When you become poorly it can add another dimension to your symptoms making things extremely hard and out of your control.
Personally, becoming poorly affected me physically and mentally. Yet no-one spoke about how this could affect me. I did have several doctors say that my symptoms were in my head, they were a result of losing my Dad several months before but that was because they couldn’t find out what was wrong with me.
I was stressed, anxious, depressed, angry, you name the negative emotion and I had experienced it. But, I knew it wasn’t all ‘in my head’. I knew there was something physically wrong with me and this was affecting me mentally. So my life became consumed with finding out what was wrong.
I am rare!
Luckily, I did but it took months, lots of hours of research, visits to different specialists, having a variety of tests and visits to London before I found a doctor who confirmed my suspicions of Symptomatic Tarlov Cysts. I was officially declared to be rare!
The exact incidence or prevalence of symptomatic Tarlov cysts in the general population is unknown. Because these cysts often go unrecognized or misdiagnosed, determining their true frequency in the general population is difficult. However, the total number of Tarlov cyst patients (symptomatic and asymptomatic) is estimated at 4.6 to 9 percent of the adult population. Nord Rare Diseases
Diagnosis without a cure
In one breath I was told what was wrong with me. In the next, I was told there was no cure. I had suddenly joined the 15 million others who live life in England with a long-term condition. You would think at such a crucial point in my life I might have been offered mental health support. Unfortunately, this didn’t happen.
When I left the hospital that day I had no offers of support, no follow up calls, no appointment with specialist mental health support. All I had was dates for MRIs, CT scans, Urology and Bowel tests. So off I went about my daily life with even more stress than before.
Not just one chronic illness but two!
Around the same time, I was also diagnosed with ME, Myalgic Encephalopathy or CFS Chronic Fatigue Syndrome. My specialist believed it was brought on by the Tarlov Cysts becoming symptomatic.
The Grief Cycle
My family suggested seeing a counsellor and I am glad I did. It was here I learnt about The Grief Cycle and how you can go through this when someone dies and when you become poorly. I only wish I had learnt about this sooner. Maybe then I wouldn’t have spent so long not understanding myself and my feelings.
What helped me
Having to give up work and doing the things you once loved certainly knocks your confidence! Being involved in creating social movements and starting #FeelGoodCom has been a lifesaver for me. Organising and attending meetups, meeting new people, hearing their stories and creating things together has given me a new focus, a new purpose and has given me the opportunity for a new career!
Looking for new ways to Feel Good has allowed me to explore lots of different things: Doodling, mindfulness, wild swimming, walking, journaling, Random Acts of Kindness, Pet Therapy, yoga, blogging, community events, social movements, campaigning, storytelling, pacing, self-love and researching the science of happiness. I had never found the time to get some creative about my wellbeing before!
What can YOU do?
If you are facing your own struggles with your health and it is causing you stress make sure you take the time needed to work through your feelings.
Seek professional help
- Have a read of the Mental Health Foundation toolkit: How to manage and reduce stress (see above)
- The Improving Access to Psychological Therapies (IAPT) programme is the NHS service that is set up for people with anxiety and depression. They have a focus on people with long-term health conditions. You can self-refer to their free service. If you would like to pay privately, BACP has an online directory of registered therapists.
- Circle of support – write a list of people who are there for you, who could help you and who you would like to be in your circle of support. People like to help but often don’t know what to do when someone becomes poorly, however, we often say we are fine when in fact we are not! Starting conversations around this can start to bridge that gap
- Community – Get involved with #FeelGoodCom – we are always on the lookout for new people to join us. There is a Feel Good Ambassador FaceBook group that has been set up to enable people to support each other no matter what life throws at us. Although we are Coventry based we welcome people from all over.
- Online support – there are online support groups for most conditions, even the rare ones! Tarlov Cyst Uk Support Group has helped me so much. Having someone who is going through a similar experience really helps you. I have even met some of the ladies at our hospital in London and we have become lifelong friends. Remember you are NOT alone – support is out there.
- Self-management – there are lots of tried and tested techniques that can help you to up your self-management game. I have found pacing my activities really helps my anxiety and allows me time to rest and refocus- The Spoon Theory by Christine Miserandino is a good example of this.
- Explore creative solutions – distraction techniques can work wonders to take your mind away from your problems so picking up knitting needles, a pen or paintbrush can work wonders on both your mental and physical wellbeing. I love the sense of achievement when I have completed something so it is probably best not to start a mammoth task!
- Mindfulness – Headspace is an app that has been recommended to me by several people, I have also tried it out and found it to be a helpful introduction to training your mind for meditation. They do a free version for you to try. YouTube is another place where you can find lots of videos that will help you to explore meditation for different things.
Explore things that make you feel good
- Self Love – this can be hard for people as we often put others before our own happiness. But how can we truly care for others if our reserves are so low? Self-love can be different things: saying no, taking some me time, treating yourself, doing the things you love, not feeling guilty, etc.
- Do the things that make you happy – when you have a long-term illness it can stop you doing the things that make you feel good. Anxiety starts to creep in and before you know it you have talked yourself out of doing it. But just think about how you would feel if you did do something that made you happy. Those feelings could outlast the anxiety. Start off small, if needed ask your family and friends for support.
I started this blog in the hope to build an online community that talks about the issues that matter to us. If you have found comfort in these words, or have some suggestions of your own please feel free to leave a comment…Likewise, if you would like to be kept up to date with everything #FeelGoodCom is doing then sign up for our monthly newsletter