This question is coming from the perspective of a young 24 year old having being diagnosed with Psoriatic Arthritis.
Please note: while the young woman has Psoriatic Arthritis, this blog will be addressing this question from the perspective of the young person with any Rheumatic Autoimmune condition. All Rheumatic Autoimmune conditions present differently, however, and respectively, they all stem from an autoimmune condition, hence the reason for this blog addressing all Rheumatic Autoimmune conditions when answering the below question.
Q: When I explain to people that I have Psoriatic Arthritis (or insert any other Rheumatic Autoimmune condition) they don’t understand why I have arthritis, and I feel it’s because I’m young and young people “don’t have arthritis”.
A: This is an all too common experience due to the systemic societal misconception of arthritis being only an “old” person’s condition. It’s difficult, to say the least, to change such a misconception, and while it should change, there are some simple things you can say to help people understand your condition better- continue reading below to find out.
It is a misconception to think of or refer to for example, rheumatoid or psoriatic arthritis, simply as “arthritis”. This common misconception is systemic within society. For example, this is a mistake commonly made by non-suffers and suffers alike, who perhaps, use the word arthritis as an over simplification. English literature tends to reflect the same mistake, and we often come across narrative references to walking sticks implying the fictional character has “arthritis”. English literature and “common knowledge” alike also tend to synonymously associate arthritis with old age, like someone’s parents or grandparents. However, this is not always the case. What many people don’t know or understand is that the word “arthritis” is an umbrella term used to describe many conditions that affect joints (and related tissues, organs and skin) of the body. Furthermore, contrary to popular belief, not all types of arthritis are strictly associated with old age; certain types of arthritis can affect people of any age, even children and teenagers.
Understanding the different types of arthritis and medical terminology
The word “arthritis” is derived from the Greek words arthro-, meaning “joint,” and -itis, meaning “inflammation.” Arthritis is a broad umbrella term used to describe conditions involving the joints of the body and can be simplified into three distinct types of arthritis: namely, non-inflammatory arthritis, inflammatory arthritis and metabolic arthritis. An example of non-inflammatory arthritis would be osteoarthritis (OA) which is a degenerative condition associated with a thinning of joint cartilage often occurring later in life. On the other hand, metabolic arthritis covers conditions associated with the deposition of crystals in joints, such as gout.
Rheumatoid arthritis (RA), psoriatic arthritis (PsA), spondyloarthropathies and juvenile idiopathic arthritis (JIA) are examples of inflammatory types of arthritis (see below paragraph for more examples). The most common form of inflammatory arthritis is Rheumatoid arthritis. Rheumatoid arthritis, like many other forms of inflammatory arthritis, is a chronic, autoimmune and systemic condition, characterised by inflammation that typically involves several joints of the body. It can affect any adult (i.e. gender, but mostly it affects women) and any age group. The persistence of inflammation can cause joint destruction which, apart from causing pain, can lead limitation/s of the affected joint, in turn, having a negative impact on the quality of life.
Chronic: long term (from a medical standpoint > 3 months)
Rheumatic/ism: various painful medical conditions which affect joints, bones, cartilage, tendons, ligaments and muscles
Autoimmune: a disease condition in which your immune system mistakenly attacks your body.
Systemic: refers to something that is spread throughout the body, affecting various body systems e.g., muscular, skeletal, endocrine.
Inflammation: refers to your body’s process of fighting against things that harm it, such as infections or injuries. The 5 cardinal signs of inflammation are redness, heat, pain, swelling, lack of functionality.
The difference between non-inflammatory arthritis (Osteoarthritis, OA) and inflammatory arthritis (e.g. RA) in a nutshell is that non-inflammatory arthritis is not due to an autoimmune condition and therefore is not systematic. People who have OA won’t experience the extensive symptoms as do those with inflammatory arthritis. Don’t get me wrong, OA can be very painful, limit activities of daily living and disable people but those with inflammatory arthritis will usually need to take disease modifying medications to reduce attacks on their joints (and other parts of their body- eyes, heart, lungs) from their immune system. If inflammatory arthritic conditions are not treated effectively, some people can end up severely deformed, disabled and generally unwell.
Apart from JIA, which can present between the ages of 3 months and 16 years, the average onset of inflammatory rheumatic autoimmune conditions is varied. For example, a study found (Amador-Patarroyo, 2012), on average patients with systemic lupus erythematosus (SLE) started manifesting their symptoms between ages 16 and 55. Rheumatoid arthritis can begin at any age but has its peak between ages 30 and 55. Sjögren’s syndrome (SS), which is considered to be more prevalent in women, largely experience symptoms between ages 45 and 50. These average ages on disease onset- the certainly are not the “rule”. Essentially, the onset of inflammatory/rheumatic autoimmune conditions can and does occur anywhere between late teens and the adult years.
Explaining your condition effectively to illicit the correct understanding/response
Finding out you have arthritis when you are young can be confusing and frightening, more so when people don’t understand your condition! It can be incredibly invalidating and disempowering when you tell some you have, for example, Psoriatic arthritis and they don’t understand the severity of it (e.g., symptoms and medication side effects may have impact ability to work or bare children) or think it’s an “old” persons condition and laugh it off, or because they cannot “see” it, they don’t think it’s real.
Here are few tips on how to explain your condition:
- It’s important to accept that most people won’t know of or understand your condition. It sucks, and it should change, but it’s ok. Knowing this may well defuse your initial annoyed (or other emotionally charged) reaction to someone not understanding.
- You may not need to physically write it out, but having a loose script prepared in your head about what your condition is may help. It means you can give a concise, clear and accurate explanation of your condition when asked.
- To avoid the wrong impression and misconception, try using the term “arthritis” later in your description, instead focus on the autoimmune part of your condition first, for example:
“I have an autoimmune condition which means my immune system, for some reason, decides to attack my own body. These attacks come and go and are called “flares”. Autoimmune conditions can affect different types or parts of the body. My autoimmune condition affects my joints (insert relevant joints/other tissue or organ). My joints become inflamed, red and sore in response to my immune system attacking the tissues of my joint (and/or other). For this reason, my condition is classified as a type of arthritis, since arthritis literally means joint inflammation. I have what’s called (insert condition).”
(n.b. This example may not be fully accurate for all types of inflammatory arthritis)
This example is just that – an example. You may like it, you may not. You may use it but need to change or add a few things. Perhaps you may like to add in the symptoms of your specific condition or the side effects of medication.
- To help people understand further, you may like to explain to them what a “good” day looks like and what a “bad” day or “flare” period looks like and depending on who they are to you, tell them how you may like help if needed
- Take the opportunity to raise awareness of your condition, even if it’s to those in your most immediate social/work circles. Depending on your level of comfort, you might take choose to educate your peers (sports club, school, university or workplace) about your condition or you can point them in the direction of organisations like Arthritis NSW for more information.
I hope this Ask Kat has been informative and helpful to you. If you’re a young person with an inflammatory arthritic condition, I would love to hear from your and about how you explain your condition to others. Please email me at firstname.lastname@example.org
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Amador-Patarroyo, M. J., Rodriguez-Rodriguez, A., & Montoya-Ortiz, G. (2012). How does age at onset influence the outcome of autoimmune diseases?. Autoimmune diseases, 2012, 251730. https://doi.org/10.1155/2012/251730 Mallia C., Coleiro B. (2016) Understanding Rheumatoid Arthritis. In: Grech L., Lau A. (eds) Pharmaceutical Care Issues of Patients with Rheumatoid Arthritis. Adis, Singapore. https://doi.org/10.1007/978-981-10-1421-5_1