So…you spend years coming to terms with having what is coined an ‘invisible disability’ and then… BAM!!!! They hit you with one or two other conditions, or should I say ‘comorbid conditions’. Happy little term that…not! So what does it mean?
Well, it’s when your body decides to screw you over just a little bit more by adding things like Lupus and Fibromyalgia. Now, in isolation these beauties are abhorrent and I have friends and colleagues who suffer on a daily basis having to struggle through normal life of juggling a home, family, work and social life. You notice people a lot more when you have a condition yourself; second guessing that wince or reluctance to do something or wondering if that volume of voice and powerful laugh is to hide the pain and frustration. You share stories and how you feel, but no one talks about the darkest of emotions; those times when you are alone in a crowded room, when you are scared to talk because you want to scream and fear that if you start, you may never stop delving into the pit of despair that you know awaits you. That false smile and genuine wish to just be ‘normal’ keeps things upbeat and that phrase ‘you’ve just got to get on with it’ churns out time after time, but in the back of your mind you are sitting in silence and the tears role on.
Having sero-negative RA has always been tricky because inflammation is rarely reflected in the blood unless you have no meds at all, so when you start complaining of always being in pain and always tired it is just explained as the RA. It seems to be that only when new specialists come on the scene that other explanations are looked at. In the last 12 months I have had two new specialists, one diagnosed Lupus and the other just recently diagnosed Fibromyalgia. Although at first the news is devastating, as old meds are ceased and new meds are introduced the realisation comes that actually these aren’t new conditions they are just newly named ones. It appears that the reason for years the medical profession could not explain my pain when not in RA flare is because they had not identified these comorbid conditions. Ha! Who knew???
So what now? Well, you can either dive into that pity party for the rest of your life or have a good look at what you can do to help yourself. Eating healthily and exercising apparently helps…erm…if I could just get the RA under control so I can exercise and prepare my own food; if I could just get this fatigue under control so I could get the energy to exercise; If I could just stop this aching all over…the cycle is never ending.
For me, learning to take one day at a time is the first step and being kind to yourself is the ultimate gift. Listen to others’ experiences and maybe take on board some of their strategies and help others. To be able to offer some comfort to others in times of distress helps me to feel better, feel useful and to have a purpose. Let’s face it…I wasn’t put on this earth to do anything physical now was I 😉