By Annemarie Gaynor
Chronic pain is a condition that is often invisible, which means that no one, including your doctor, friends, or family, can see it. Unlike other health conditions, there may not be any visible signs or scars that indicate the presence of pain. Living with chronic pain can be a lonely experience, as it can be difficult for others to understand what you’re going through. While you can talk about your pain and how it affects your daily life, the experience of pain is unique to everyone, and it can be challenging for others to fully comprehend what it’s like unless they’ve experienced it themselves.
A Life Changing Diagnosis
In November this year, I received a diagnosis that changed my life. I was diagnosed with Rheumatoid arthritis, an autoimmune disease. We hear so much about older people having this. However, most people do not know that the Rheumatoid arthritis your grandmother has is entirely different than the one someone gets before age 50.The panic I felt when diagnosed sent me into a panic.
As a mother of a four-year-old son, I questioned if I would be mobile when he was 20. I watched my mother suffer immensely from this disease and subsequently pass away far too young. I thought I had understood the disease and level of Pain, but I completely misunderstood everything regarding her suffering
As a nurse, I have cared for people who have experienced various levels of pain and discomfort. Despite showing empathy, kindness, and concern, I have found it difficult to comprehend their pain fully. When a patient I have cared for passes away, I understand that it is a sad event, but I don’t feel the same level of grief as their family. The family of the deceased is the one who experiences the most significant loss, and it is their grief that needs to be acknowledged and dealt with
This has made me look at living with my chronic pain and managing my mindset around how I handle the situation. I decided to own my Pain. My Pain is mine and no one else’s. I realise that no matter how I explain it or how I express life with it, no other person will understand my Pain precisely as it is not their Pain
Taking Control of the Pain
By gaining more knowledge about your condition, medications, and treatment options, you can regain control and take charge of your pain. Identifying and managing your pain can help you feel motivated and positively impact your attitude towards your health and future. However, there are some aspects related to chronic pain that one may not be prepared for. There is a significant amount of stigma attached to chronic pain, and people with this condition often must deal with other people’s responses on top of the physical and psychological impacts of the disease itself.
The stigma around the condition causes more stress
People living with chronic pain often experience a general lack of understanding and acceptance of the validity of their pain. This adverse reaction to their chronic pain can come from the medical system, healthcare professionals, work colleagues, loved ones, or even strangers they encounter. The result of this is that people with chronic pain often hide how much pain they are in because of the stigma surrounding invisible illnesses. They feel pressure to conform or fit in because others think they look healthy and often, they worry that they may be seen as over reacting.
Numerous studies have indicated that people suffering from chronic pain encounter various challenges in different social settings, such as family, society, and work settings. Therefore, it is important to communicate with your loved ones, friends, and colleagues about your pain. Although they may not fully comprehend your experiences, try to make them understand your situation and guide them on handling situations where your pain may affect your daily life.
Limitations and Embarrassment
I feel personally feel a level of embarrassment around having Pain. For example, recently I purchased a ticket to a fashion show. I was in immense pain that evening but still thought that I needed to go because I needed to support the cause. I spent roughly two hours thinking about what to do; this increased my stress levels, which added to the Pain. Eventually, I decided not to go. Although my Pain was extreme that night, I spent the night feeling guilty for not going. I mumbled out some excuses to the organisers and my friends the following day, but strangely, I felt too embarrassed to say ,”I was in too much pain”.
Fatigue
Living in chronic Pain causes chronic fatigue. Inflammation and Pain often cause a level of fatigue I never knew was possible. I usually see myself as someone ‘full of beans, considering sleep as overrated. I was always described as always on the go, or my parents’ affectionate nickname for me, ‘road runner’, as I was never still. Suddenly, that changed, I could not stay awake. Even though I was getting ten hours of sleep at night, I was falling asleep at lunch at work. The level of fatigue has a massive impact on your life. It is also highly misunderstood. I have often wanted to wear a t-shirt that says, ‘not up partying all night but in extreme pain’.
Living in a State of Chronic Pain can be an Incredibly Lonely Place
Yes, I have decided to own my Pain, but no, this does not mean that I am happy with it. It is amazingly easy to spiral into a mindset of worry about the future, expecting the worst and going down a spiral of depression and fear.
There are other reasons why people with chronic pain experience more loneliness which include:
Stigma or a lack of understanding from friends/family/society
Loss of job/career reduces opportunities to socialise
Unpredictability of Pain and fatigue–not knowing how you will feel day-to-day
Balancing the desire to be active with the subsequent impact on Pain
Financial issues, lack oftransport
Low mood and mental health issues
One of the most challenging aspects of living with chronic pain is that people expect you to be the old you, while others believe you can’t do things. I have watched as friends disappear, and I have experienced being told what I can or cannot do. However, the only person who can judge your ability Therefore, I have included some tips which were incredibly useful for me. I hope they help.
Helpful tips for self-management of chronic Pain
99% of the time on your own–1% withhealthcareprofessionals
Establish baselines for regaining your fitness, set Goals
Stress is the body’s response to a threat
All your attention is on the threat (distraction techniques).
Stress releases cortisol, which speeds up nerve signals
Anxiety/negativity sets in
Catastrophising–thinking the worst (Don’t)
Stress and Pain have a strong relationship
Life causes stress/anxiety
Understanding more about your condition
Use distraction
Do something you love doing
Do something with meaning
Think of what you can do rather than what you can’t
Fillers–Drainers: fillers build up reserves, drainers reduce reserves
If you are struggling to accept living with chronic Pain, please reach out to your GP and ask to be referred to a pain support group, counselling service or pain clinic
