Other Pain caused by Chronic Pain

Hello fellow Spoonies, 

Today's blog post is about the things that hurt, other than the physical body pain, with a Chronic Pain Condition. This post aims to show the comments and judgements that every individual with Chronic Illness has to put up with. 

Awareness -There is a distinct lack of awareness of the Chronic Illnesses, which can often lead to ignorance and an absence of support.

• The lack of understanding from other people
• The lack of education and awareness of the condition
• The dismissal of the condition, simply because no one has heard of it
• The fact that nobody else can see the illness at all, as it is completely invisible - this usually causes disbelief
• The absence of any publicity of any Chronic Illness, which in turn causes an `insufficient understanding
• The insufficient funding for people who have Chronic Illness so that there is a massive shortage of support for us
• The insufficient amount of disabled friendly clubs, bars and concerts

Validation – Due to the lack of understanding, many people with Chronic Pain and Illness do not feel that their pain is validated.

• The constant comparison between Cancer and Chronic Illness
• The feeling that our pain will never be validated unless it caused by something (such as a break) or is a known condition (such as arthritis)
• The terror of trying to explain to somebody, be it a boss, colleague, friend, family member or potential love interest how much the pain affects your everyday life, and why you can't do certain things they have asked you to do

Relationships – Chronic Illnesses affect all our relationships, be it with family members, friends, colleagues or romantic partners.

• The impact it has on our families as all family events must be catered to suit us
• The things that friends and family have to miss out on because of us
• The feeling of always being a burden to people with spend time with, especially our family
• The pain of making the decision to distance ourselves from people so that we don't become that burden
• The disappointed messages and looks when you have to cancel plans or call in sick at work for the 10th time
• The loss of friends because we have to cancel so often as our pain does not fit with our plans
• The difficulty finding a partner because they also have to take the role as a carer
• The look in your friend's and family's eyes when they feel completely helpless

Comments – As a result of the lack of awareness and education around Chronic Illness, many Spoonies are used to enduring unkind comments and conversations.

• The "at least you don't have cancer" comments, despite Chronic Pain and Illness lasting a lifetime
• The suggestions people make to help us "feel better" including, but not limited to, diet, exercise and losing weight
• The labels put on us, including "benefit scroungers", "lazy workers" and "unreliable"
• The looks we get when we use Disabled Facilities in public, such as bus seats, toilets and car parking spaces
• The comments especially about being unreliable, as it is not us that is unreliable- it is our body
• The nasty looks and comments when you don’t give up your seat for an elderly person on public transport, because we may look so young and healthy, when really, we are struggling to stand ourselves
• The people who say they understand when they've never experienced it before
• The little comments about laziness, lucky to not work or staying in bed all day, which truly hurt because we would do anything to be back at work/study full time

Mental Health – Physical and Mental Health are closely linked, and therefore those with Chronic Illnesses often struggle with Mental Health problems.

• The low self-esteem because we cannot make our bodies look the way we want them to
• The difficulty to let people in and not put on the front
• The uncontrollable bad moods and snappiness when the pain and fatigue is at its worst
• The front that we must put on every single day so that we can go about our day without being judged
• The fear that we will lose many of our fellow Spoonies too early as 1 in 4 people with Chronic Pain commit suicide
• The mental health battle that comes hand in hand with Chronic Pain
• The isolation that stems from not knowing enough people who can relate or understand, and not being able to leave the house on some days

Fatigue – A side effect for most of those who struggle with Chronic Pain is Fatigue.

• The insomnia and sleepless nights
• The mental and physical fatigue
• The constant fatigue because our bodies are so worn out by pain

Medical – To be diagnosed with Chronic Illness, any other condition must be ruled out. This often means that those with Chronic Illness have to spend a lot of time in medical centres.

• The many side effects of pain medication such as weight gain/loss, nausea, migraines, bloating, mood highs/lows
• The lack of cure, and the knowledge that we will have to endure it for the rest of our lives
• The frustration of knowing that there is no cause, there is nothing that shows up on tests/scans and it's just "one of those things" that unlucky people get
• The GP's who tell us that it's "all in your head" because nothing shows up on the scans and tests they have done
• The repetitive scans, blood tests, medication reviews, invasive procedures and appointments
• The Brain Fog that means I forget a lot, even with alarms and reminders
• The poor immune system that means we're constantly getting colds, infections, bugs. If you’ve got it, we're getting it

Limited Young Life – This section is more specific to being young and having a Chronic Illness. It is often said that the teenage years are the best ears of your life, so to have these taken away from you due to illness is a pain many have to deal with.

• The things we miss out on, including nights out, holidays/trips with friends, spontaneity, pulling” all-nighters", education
• The lack of money and career prospects as many of us cannot work or can only work part-time
• The inability to "follow your dreams" as they are hindered by the condition and they usually become unrealistic due to the physical limitations of our bodies
• The lack of choices we have in our life
• The absence of power and control over our own bodies
• The jealously of healthy people who can do all the things we cannot do
• The social media posts of people our age travelling, going out on nights out, going to concerts/festivals that make us feel like we are losing the best years of our life
• The hardly existent sex life because we have to preserve our energy to simple brush out teeth in the morning
• The grief of having a "normal" life taken away from us and replaced with an extremely limited one
• The regrets of not doing more when we were healthy

Thank you for reading.

As always, any comments and suggestions are greatly appreciated.

Love and Spoons,

Allie x x x