Day 3 of RAblog week, our prompt is…
Explain your RA – perhaps you want to tell someone else, (doctor, sibling, child) pick a person and decide what to tell them. You might want to tell them about living with RA or what it is like to have RA? Perhaps you want to write a letter to a fictional person. You might also choose to write to a newly diagnosed person about life with RA.
I’ve been pondering this one for days, who to write to? Friend, family, doctor, rheumatologist, physiotherapist? But they all at least sort of understand. So, a stranger then, someone who needs understanding but doesn’t have it. Then like a light bulb moment it hit me. To all strangers, to those who glare at us for having disabled parking, who moan about us taking benefits or think we’re addicts for wanting pain meds that are strong enough to be of use. This is for you.
I’m asking for just a few minutes, that’s all. A few moments when you put your prejudice aside and listen. When you allow yourself to stop judging, and hear me. I believe it will help both of us, shared understanding certainly brings empathy and compassion.
This time last year I started feeling tired. Sounds so innocuous, we all have off days. By December I was tentatively diagnosed with RA, and at this point I was getting really bad inflammation and joint pain, I couldn’t move my left shoulder, or use my hands. I had to ask people to cut up my food on occasion, just think for a moment about how helpless that might make you feel?
I was officially diagnosed with RA in March, and by this time I had done quite a lot of research, and to be honest I was scared. Really scared. I was having more & more time off work, and I was now getting joint pain all over, feet, knees, hips, elbows, shoulders, wrists, hands, lumbar spine. On top of this the fatigue was getting worse, causing ‘brain fog’, making holding meetings or working on contracts for work almost impossible, I would lose words mid sentence, concentration on and retention of facts and numbers was just not happening. And I was so, so tired.
I was also aware by then of the fact that RA is systemic, meaning it can attack elsewhere in the body, affecting the eyes, heart, lungs etc. And just to top it off the first med I was prescribed increased my risk of developing lymphoma, losing my hair and liver damage. It’s a tough disease requiring tough medicine. I was signed off work in March, meaning I lost my income. I live alone.
So yes, I have had to claim benefits. I lost my home, and I’m very fortunate the council are shortly providing me with an adapted bungalow. Believe me no one wants to return to work more than I do, at the moment it’s just physically impossible. I can barely walk on crutches and I’m in pain 24 hours a day. Yes, I also have a disabled parking badge. I couldn’t function without it.
And as far as I’m concerned that’s exactly what our benefit system is for, it’s a safety net for those, like me, who through no fault of their own need financial assistance just to live.
RA is known as an ‘invisible illness’. Symptoms aren’t obvious from the outside. So please, can I ask that next time you see someone who looks ‘healthy’ using a blue badge, or having to cease working and claim, you stop and think, just for a moment. I am ill, the last thing I need is to be judged.
Denise (on behalf of all with RA).