First of all I’d like to say that I’m 24 years old now, I only got the diagnosis of RA about 2 years ago but it’s been going on since I was about 16-18 years old, so I’d like to give some background information. I started to notice that my joints were quite painful, mostly my back and knees. I used to be quite small as a child and all of a sudden I grew quite quickly so my doctor always said that the pains were just normal growing pains as my body grew too fast at once. I didn’t think much of it and just carried on with my life like I normally did.
I used to do all kind of sports from gymnastics to swimming. I never really did those sports for a long time except for horse riding. I started horse riding when I was about 12 years old and absolutely loved it, I was actually looking to get into the professional side of it as the ultimate goal was to reach the Olympics (I did had the talent to get so far one day). Unfortunately I had to stop this dream due to the pain I had during and after riding at the age of 18. At the same time I started nursing school. During the first year everything went well but in my second year my right knee started to swell up and be very painful, I thought it was just because of the internships I was doing, the long hours standing up. I didn’t think much of it until one time knocked my knee against a patients bed and I couldn’t bare the pain, the nurse I was working with told me I really need to see my GP as it might be a nasty infection (I recently had a tattoo done on that place so there’s always a risk).
I went to my GP and he basically immediately referred me to a rheumatologist. So I went and took several tests, I must say I never thought it would be possible to do so many blood tests, MRI’s and x-rays in like a month time. The tests came back and my specialist was sure I had some type of arthritis but he didn’t had a clue of which one yet (My RA tests always came back negative, even now). I started medications and I was pretty hopeful everything would go back to normal, but my body did not respond on any of the medications I was given (we still haven’t found the right ones). In February 2017, I was 21, my body developed another chronic illness, CIDP, due to a medication (Enbrel) I was taking for my RA. CIDP is a neurological disorder which targets my body’s nerves, in my case it causes numbness, pain and less strength in my legs, arms and hands. I received plasmapheresis for several months, twice a week.
I’m 24 now and I’m worse than ever.
It’s not only my right knee anymore that’s affected by my RA but also my left knee, both elbows, both wrists, my right thumb (I cannot hold a pen anymore for example), my jaw, both hips, both ankles and my shoulders are starting as well. I walk with a cane and going to places, like shopping or going out with friends, isn’t possible anymore as walking and standing up for longer than one minute makes me have an unbearable pain. So for now online shopping is like a lifesaver haha.
I need help for all sorts of things but the thing I struggle the most with is the fact that I need help to get washed and dressed (I also use a bath seat, they’re amazing). It’s humiliating to be honest. I can imagine that it’s already a hard thing to accept when you’re like 80 but being 24 and not being able to do your personal hygiene is very very embarrassing. It’s something I struggle with the most mentally and I still haven’t really accepted it.
Another thing I’m kinda embarrassed is to need/use a raised toilet seat, we have 2 toilets in the house and I decided to only put the raised seat upstairs so that way if guests are around they don’t see the raised seat. A bit silly, I know, as I could use those on both but I still have a hard time accepting needing those sort of things. Due to my RA I also recently got other diagnoses but I won’t go into that as I really want to focus on RA, I wanted to mention it as it’s very common that most people don’t get diagnosed with only RA but also with other chronic illnesses linked to RA.
The constant pain I’m in makes it very hard to handle everyday life. Getting out of bed is often a big task on it’s own. Getting downstairs involves being very careful to not trip and fall. Getting coffee means hoping there’s some milk already open as I can’t open them myself. Getting in the sofa means making sure I have everything near me first so I don’t have to get up again and risk falling while being alone whist my mum is at work. Getting showered means being washed and dressed by someone else. Having dinner means often that my mum needs to cut my meat into pieces as I can’t do it. Going outside means relying on someone else as I can’t drive at the moment.
Doing normal everyday stuff isn’t normal everyday stuff for me anymore.
This is what it is like to live with RA.