Whilst Chronic Disease Awareness Day is primarily ‘celebrated’ by our friends across the pond, we thought we’d join in and take a minute with Jess our Office Manager to talk a little more on the subject.
We hope that you find the message as illuminating, and fascinating as we did, it’s a genuine insight into what it’s like to live with a chronic illness.
‘’A Chronic Disease or condition is, in layman’s terms, a complex illness that can last many years, for some a lifetime, that can generally not be cured completely or ‘self-fix’.
In England, around 1 in 4 of us have a long-term chronic health condition which ranges from cardiovascular disease, cancers, depression, Diabetes, and in my case, I hit the jackpot with both Crohn’s Disease and Spondyloarthritis.
These two conditions are Auto Immune, where my body’s immune system is a little broken and can’t tell the difference between my own cells and foreign invaders so I’m attacking myself.
When your immune system is working, and you get a cold for example, your white blood cells are sent to the source of the virus to knock it down. When the blood vessels swell in your nose and airways, it can make you feel stuffy or achy.
The white cells release chemicals to help fight the virus, which can cause areas to be inflamed. This can cause fluid to build up, which is why you get a runny nose and a cough.
Your body is trying really hard to fight the virus, which is also why you feel fatigue and generally a bit pants. It is also learning about the virus and creates anti-bodies so that if you were to catch that virus again, your body will remember it and won’t have to fight so hard for so long to fix you.
With an Auto Immune disease, the wires are a little crossed and your body mistakenly can start attacking healthy cells or can’t stop attacking once a virus has passed. It continues to create inflammation and therefore pain, is constantly fighting which is why the fatigue continues and blood vessels stay dilated which is why joints ache. In some cases, it could be a genetic/ hereditary condition, extreme stress on the body, an injury, or an over-active immune system after a previous illness.
I consider myself fairly lucky with some of my symptoms, but like most with long-term illnesses and chronic pain conditions, you try to live a normal life as possible so it’s not always noticeable that I am sick. There are days where I do almost forget that I am unwell, and there are some days where I struggle to lift my head off the pillow and am unable to leave the house with… other side effects and extreme pain. I have support through Crohn’s & Colitis UK who have given me a Can’t Wait card and a Radar key for public bathrooms as well as a great online forum, National Axial Spondyloarthritis UK who provided my info card about handling my spine and neck with care, and Verified Hidden Disability Status with National Disability Card and Access Card through Nimbus Disability so that anywhere I go, if I need help, I can show my cards and get access to toilets, seats, medical staff or general help if needed.
I am about to start a new course of treatment to halt the spread of the Arthritis in my spine any further. Currently, it is affecting my whole pelvis/ pelvic region and just above, mostly on my right side, but has also started to show up in my mid-thoracic region around my rib cage meaning that when it is particularly bad, I struggle to breathe and move and it can be incredibly uncomfortable.
I know my conditions can’t be cured or reversed, but I am hopeful that they won’t progress any further and that at some point in the future there will be a cure.
If you want to know any more about these conditions, take a look at https://crohnsandcolitis.org.uk/ and www.nass.co.uk
My advice for anyone either suffering with a chronic illness or their friends/family/ co-workers:
- Everyone experiences these conditions differently, it doesn’t make your experience any less valid, especially if your symptoms aren’t the same or you cope with it differently. Nor does it mean that because someone else with the condition worsened/got better/ tried different things, it doesn’t mean that will be your story too.
- Fatigue is VERY different to being lazy. I can’t ‘just get up and go for a walk’ as I truly have no energy left, or I am in pain.
- Look up spoon theory to help explain/ understand how debilitating fatigue and living with illness can be.
- Advocate for yourself and get as many second opinions as you can about your health if you do not feel right.
- Being newly diagnosed, and then living with a chronic condition can be a REAL rollercoaster for anyone. Doctors’ visits, hospital stays, nurses, blood tests, invasive procedures, scans, medications, surviving, can take a toll on someone and their support network around them. Ask if there is anything you can do to help, even if it’s just chat and make a cup of tea.
Living with any kind of chronic condition is rubbish, but with a great support network around you it can be a little easier. And sometimes a little easier is all you need to get through the day.’’
Stay safe and well!
