My diagnosis
I struggled tremendously to get diagnosed, it took years. I started experiencing mild niggling symptoms when I was about 15 on & off until I was about 18 when the symptoms got much worse beginning in my knee. I was sent to see a physiotherapist by my doctor at the time, as I had a golf ball type swelling on the top of my knee & he was the first to suggest & was convinced that I had arthritis. So off I went back to the doctors to tell them what he had said but they were convinced that I was far too young to have arthritis. In the end they conceded enough that they agreed that there may be at least something wrong with the mechanical side so sent me to orthopedics, one MRI later & they confirmed that it was arthritis.
1. You’re too young to have arthritis & why do you walk with a stick?
I have had full blown arguments in the past with people that have argued, sometimes nastily, that I couldn’t possibly have arthritis because I was too young. Most people that have approached me, have thought that I walk with a stick because I must of hurt my leg in some way, they never think that its arthritis.
Unfortunately people are less aware that young children can have arthritis so it really affects people of any age.
2. What kind of things do people say when people find out I have arthritis.
Can’t they cure it? No at best they can manage it
But I’ve read that supplements, diet & exercise changes can cure it? Again no, although a healthy diet & low impact exercise (which not everyone can do) would help a little for people with inflammatory arthritis, supplements such as Glucosamine, diet & exercise isn’t a cure.
I’ve tried to think of the best way to explain inflammatory arthritis. I live with it & I’m still trying to understand it. But I’m going to try & explain it briefly
Inflammation occurs naturally when people are sick or injured, if you did a blood test some of the same markers may come up in someone with inflammatory arthritis but they would also have additional blood markers. Someone with inflammatory arthritis still gets inflammation if they’re sick or injured but their body also produces an inflammatory response that starts to attack the body affecting bones, tissue & cartilage. People experience an array of symptoms including pain, discomfort, stiffness & fatigue & scientists are still not certain as to why it occurs
This is in contrast to osteoarthritis which is degenerative & without the inflammatory response seen in inflammatory arthritis.
People with osteoarthritis still have pain & discomfort but that’s because there is damage present whereas with inflammatory arthritis the pain can be present even before bone damage has occurred as well as after.
This is why for example for some people with osteoarthritis, exercise to strengthen the muscles around an affected joint can help support it, whereas although it is beneficial to have strong muscles for someone with inflammatory arthritis, unless the inflammatory response is treated with medication, minimal benefit could be achieved and this seems to be where peoples’ misunderstanding lies.
3. So if you have a certain type of arthritis is everybody affected the same way?
You guessed it, Nope. I have Psoriatic Arthritis which some people may be affected quite mildly by but i’m one of the few that get affectef quite significantly. I also like many have additional conditions as well as my arthritis.
4. So what is it like dealing with your arthritis?
My day to day living - I have difficulty doing various tasks even personal tasks (that i’m not going into) but even being able to brush my teeth can be too painful because of my wrist, similarly with other tasks around the house. This also includes any task that includes sitting, standing or walking. Kneeling is out of the question.
Going out - For example you may want to go to an event so you book tickets & go. For someone like me you would need to….
Check accessibility. Are there seats? can they provide wheelchairs? if not, can we hire one nearby? what if there’s too many people & we start getting crushed? & then plan the travel arrangements & then back up arrangements & booking assistance for the travel arrangements & so forth.
Then additionally we have to deal with various GPs, Consultants, nurse & physiotherapist appointments & such & not just for my arthritis. It’s common for me to have three appointments a week but as my Gp said dealing with long term chronic conditions is like doing a full time job when you’re sick all the time.
I’m not going to go into more of the personal details of how my arthritis affects me because I have to explain so often to doctors & in forms that if I don’t have to I don’t want to :)
However, I am very thankful & lucky to have the support of my amazing fiancee & carer who helps me greatly.
5. How do people treat you?
People seem to fit into three categories.
The ones in their own bubble who don’t see you so may inadvertently walk into you or ignore you without knowing.
The people that do see you, may glare at you, muttering things at you or verbally assault you. Unfortunately these people believe the propaganda, that there is huge benefit fraud, that things are harsher for them because people are getting huge amounts in benefits & receive things that they don’t.
I think that there is a misunderstanding of benefit entitlement, that people believe you must be bed bound to qualify & they don’t understand how difficult it is to manage a disability & maintain any level of normality.
And finally the last group of people that have an understanding of disability, usually because they know someone that has a disability.
For me personally, although at the start I had just a few niggles, now I’m always in some degree of pain (not just because of my arthritis) & things that you never needed to consider without the disease you now have to. I have found a great way to explain the types of compromises that people have to do when dealing with a disability is through the spoon theory.
I’ve covered a fraction of what its like to have arthritis but the best thing to come through more awareness, would be for people to see a girl struggling to get on a bus with stick in hand & instead of ignoring her existence or thinking shes a fraud, offer a seat before she stumbles? Please educate yourself as intolerance can be worse than dealing with the condition itself.
There are many types of muscular diseases. Depending on the source there are up to 200 hundred different types which shows how there needs to be more awareness & that for each type we are all affected individually. People need to start asking if they’re unsure (reasonable questions) & for us to be open to answering them.
Stay awesome & at all times keep hold of your spoons :)
Useful resources on arthritis
Arthritis Care - For support & information, they have a helpline & forum
Arthritis Research -For further information
What I have written about is only a fraction about my condition & what I experience. Each condition can affect each person differently. If you are worried or want further advise there are many resources available don’t worry in silence :)
No comments:
Post a Comment