RA is like sunburn

I’m 24 and I’ve just been diagnosed with RA. I started out just experiencing symptoms of swelling and pain in my right index finger in March 2014, so in May when the pain hadn’t gotten any better I booked in to see a doctor and long story short I was sent for blood work and diagnosed with RA.

So. In the four months between my diagnosis and my Specialist appointment to be put onto a medical regime my symptoms went downhill like a runaway trolly: I went from having A painful finger to having ALL painful fingers, there is a sharp, agonising pain in my left shoulder if I have it still for longer than 15 minutes (makes getting up in the morning a serious chore), my wrists are swollen and painful, so are my knees, my ankles, my heels and my toes constantly feel like I’ve just kicked a rhino.

Between doctors telling me to use fish oil and people telling me that taking so many meds is bad for me I’m finding it difficult to find any support in coping. I feel on the verge of tears all the time because I’m in pain, I’m frustrated, and no one gives a s**t. I told my parents. My dad has osteoarthritis in his right knee and assumes my pain is the same as his and I should just suck it up and get on with it. I’ve given up trying to explain that my condition will get WORSE if I don’t take my medication and that it’s NOT the same as osteo.
Yeah. I’d get more understanding from talking to a doorknob. At least the doorknob wouldn’t roll its eyes at me every time I I flinch when I have to stand up because my entire body is killing me.

I even told some of my work colleagues – sort of have to when I had to take time off before I was in so much pain. And with every one of them I get this universal look of mild sympathy like I’m telling them I have bad sunburn.

I used to draw in my spare time and it’s been a love of mine for as long as I can remember. It’s also something that gives me comfort from the pain – so, can you imagine my distress when last week I picked up a pencil and had to drop it again because my finger joints were so swollen and painful I couldn’t even bare to draw a straight line? Losing that has been harder to accept than losing the ability to hold my toothbrush properly, or brush my hair, or shut my car door. All the small things I could do before that I never paid attention to now make me think of how to do them without causing myself more agony.

On the plus side, I’m also a serious video gamer and I now have a legitimate excuse to “hibernate” in my room as my mum puts it because I’m naturally about as tanned as a ghost and, coupled with increased light sensitivity from the meds, I find it difficult to be out in direct sunlight.

It’s now a family joke that I’m secretly a vampire, so at least I’ve found something to laugh about in all this! I don’t try to explain to anyone anymore that I have RA or what it is, because to them, it’s just like sunburn.

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Comments

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  • erika fogazzi
    4 years ago

    Was diagnosed with it 2 years ago at an age of 68,have never had a sick day in my life and all of a sudden I feel like a total cripple. The medication Methotexrate worked well for a while when I developed chest pain and difficulty breathing so I stopped. I still take steroidal medication but it doesn’t seem to do much, had a recent bout when I thought my right hand was exploding the pain made me scream and have no idea what brought it on. My fingers and wrists hurt all the time thank god that it only hurts periodically in my elbows and shoulders, I work out in the water since I live in the south that seems to help somewhat, but the fatigue really slows me down. I just sigh and say it is what it is could be something much more worse so I’m thankful for that.

  • Mariah Z. Leach moderator
    4 years ago

    Hi Sam ~ Thank you so much for taking the time to share your story. I was diagnosed with RA at 25 so I understand what you are going through and it isn’t fun. I really admire you for trying to keep your sense of humor because that can really help you move forward. I promise that the early days of diagnosis are the absolute worse – you will still have ups and downs in the future but it will get better. It can take some time to find the right treatment (and that can be a long and frustrating process) but when you do find medications that work for you it can truly improve your quality of life. If something is important to you (like drawing) and you are determined I have no doubt that you will be able to get back to it in some way at some point. But the waiting for things to get better is really hard, I know, especially with the lack of understanding from friends and family. That’s why I am so glad you have found our community here – we understand what you are going through and we are here to support you! Hang in there!

  • Carla Kienast
    4 years ago

    Having been diagnosed six years ago, I think the early days may be the worst. You’re searching for some relief and trying adjust to the “new you”. And NO ONE understands. (That doesn’t seem to get better. The rest of the stuff, probably, but not that …) Hang in there. Being a vampire isn’t all bad. 🙂

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